| Postits Archives 1 May, 1999 -
March, 2000 Postits Archives 2 March, 2000 - May, 2001 Postits Archives 3 May, 2001 - October, 2001 Postits Archives 4 Oct , 2001 - October, 2002 Postits Archives 5 Oct, 2002 - December, 2002 Postitis Archive 6 Jan, 2003 - March, 2003 Kate's original Postits 1996 - May, 1999 |
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address: Julbell84
type: systemic (diffuse or CREST)
Date: 10/03/02
Time: 10:02 AM
My mom currently has Scleroderma, and has had it for about 6 years now. I would love for anyone who has it to e-mail me, or send me information so that I could learn more and understand this disease more.
address: julbell84@aol.com
type: systemic (diffuse or CREST)
Date: 10/03/02
Time: 10:00 AM
My mom currently has ascleroderma, and has it forabout 6 years now. It really affects our family, and I would love anyone to send me information or if they would talk to me about it. So I can understand it more.
address: dollybhagat@yahoo.com
type: systemic (diffuse or CREST)
Date: 09/28/02
Time: 04:01 PM
I was diagnosed with scleroderma in India 14 yrs ago its been a tough fight but i was determined never to be depressed about it, if its there i have to fight it no point feeling sorry for myself. i'm not being fair to my adorable family they have been a big support to me. i think now i'm finally free of scleroderma at least i hope so, i have many side effects deformed hands and feet aching joints but that doesn't bother me at all.anyone needing help please write to me. Dolly Bhagat. India.
address: DTruxall@aol.com
type: systemic (diffuse or CREST)
Date: 09/27/02
Time: 05:46 PM
My name is Dixie and I am 60 years old. I was diagnosed with CREST in July, 2002. My symptoms so far are Reflux (which I have had for about 18 years), Raynaud's (which I have also had for about 18 years) and extremely aching muscles over my whole body which just started last spring. I am having a lot of difficulty walking especially after being seated for a while. My legs ache worse after I have been on them for a while because they swell. I wake up every morning with swollen, aching fingers. I crochet a lot and am trying to keep it up so I can hopefully keep some mobility in my hands. So far I am taking Prilosec and Lotril for high blood pressure. I also take Synthroid and Pravachol which, I believe are for unrelated problems. I have started take "Slow Mag" (a magnesium supplement). I read that low magnesium levels in your body can cause aching muscles so I'm hoping it will help. I realize I am older that most people that are diagnosed with Scleroderma so I am wondering if there is anyone else my age who has this disease and what I can expect from here on. Please feel free to e-mail me.
address:
type: systemic (diffuse or CREST)
Date: 09/26/02
Time: 12:32 AM
address: GIBSONFLO@AOL.COM
type: systemic (diffuse or CREST)
Date: 09/26/02
Time: 12:31 AM
HEY THERE EVERYONE.IT'S KIM AGAIN.I JUST WANTED TO LET EVERYONE KNOW HOW I AM DOING.I AM TAKING THE CYTOXIN CHEMO TREATMENTS THEY WERE EVERY MOTNH BUT NOW THEY ARE JUST EVERY OTHER MONTH. THE DR. SAID THAT MY LUNGS ARE DOING BETTER SINCE STARTING THE TREATMENTS BACK IN JANUARY.[I AM SO HAPPY] I AM FINALLY STARTING A SUPPORT GROUP IN MY ARE "WINCHESTER KENTUCKY" I AM AM VERY EXCITED ABOUT THAT.I HAVE MADE A SCRAP BOOK OF ALL OF THE THINGS THAT I HAVE BEEN THROUGH FOR THE PAST COUPLE OF YRS. AND PICTURES AND STORIES OF THE PEOPLE I HAVE MET.IT REALLY HELPS A LOT TO KNOW THAT THERE ARE A LOT MORE PEOPLE OUT THERE THAN I HAD EVER IMAGINED.WELL EVERYONE TAKE CARE AND BE STRONG AND E-MAIL ME ANYTIME I AM ALWAYS UP FOR GOOD CONVERSATION.. KIM GIBSON
address: carolynw@paulbunyan.net
type: systemic (diffuse or CREST)
Date: 09/25/02
Time: 09:05 PM
Hi, my name is Carolyn, and I have Sceroderma. I was diagnosed in April 1998. Currently I am not on any treatment, however I go every three mos., for tests upon tests. I drive 300 miles one way to the Minneapolis, MN area. Right now my body is adjusting to the upcoming winter. Every spring and winter I go through a phase, I feel sick. I have Pulmonary Fibrosis and it is also affecting my liver. Next week I will find out about my heart. So far my kidneys are stable. My skin is tight, I hope it doesn't get too much tighter, although I notice a difference. I better end here. If anyone can offer any hints or suggestions, please write.
address: kelleymom@.aol
type: systemic (diffuse or CREST)
Date: 09/20/02
Time: 01:02 AM
This is my grandmothers Email but feel free to write me back on it me and my boyfrien were just hit with the possibility that he might have scleroderma please let me know more abouth the disese and the stages that you went through we are scared and have no type of income to help us find out we tried every program to help us but nothing has worked we did read up on some of it and the symptoms are similar to what he goes through so please iam asking for your help please e-mail me back or write to me LISA LOVETT, 223 E WILLOW CREEK DRIVE # 3, AMARILLO, TX 79108 THANK YOU.
address:
type: systemic (diffuse or CREST)
Date: 09/18/02
Time: 11:47 PM
address: hafbakedaz@aol.com
type: systemic (diffuse or CREST)
Date: 09/18/02
Time: 11:44 PM
Hi my name is Angel i am 17 and my mother has scleroderma. my moms first symptoms were not recognized until about 2 years ago. my mom and dad seperated and i lived with her for a while and then we got and to a fight i threatened to move with my father and shortly it happened. a couples days later we began to talk again but i just had not seen her as much she always working or taking care of something. One day she just got really weak and she just felt like she couldn't breathe so she went she got rushed to the hospital. i got a called from my grandmother telling me the story. well she went to the haspital and she stayed there for almost 8 months. i knew something was wrong , but no one would tell me. i went to see her and she was just eating from a bag it was like nothing i had ever seen before. i didn't want to see that. well soon enough my grandmother had let me know what was going on. it upset me alot i was mostly mad because my mother would not tell me anything. well soon enough she was out of the hospital still eating from the bag but there was a nurse over once or twice a week to help her out. soon enough she was back to regular food and she was back on her feet. she regular making visits to the doctor for checkup. she starting getting weak about a year later and decided she could not work anymore. well shortly grandmother decided to move to florida so my mom got helped out by a freind and moved in her own apartment. she is still there but we are much more distant. i hate seeing her like this because hse doesn't even look like the personthat brought me. it is so scary. i wish this wasn't happening to her and i also would not wish this upon anyone else. i want to help i want to try to make a difference i don't want to watch her just vanish. i love my mother so much. Angela
address: whopps1@msn
type: systemic (diffuse or CREST)
Date: 09/13/02
Time: 05:14 PM
I was told I have crest scleroderm,4yrs ago. It has effected my lungs,I have ashma anyway and it is more bothersome now. I have problems swallowing sometimes. I have rynards, in Aug,I had to have a blockage in by kidney taken care of but they said they don't know if it is from the illness or not but it could be. I also have high blood pressure that they can't keep under control. I feel like I don't know enough about this to know if other things that are going on are part of this or not. I have a very good support system my husband is wonderful, I have 2 son's and they are very supportive I also have a wonderful daughter in law who is very good to. The rest of my family realy don't understand that this is a serious illness. They don't understand that I get very tired. Both of my parents are alive but have been sick for the last year and a half I have been taking care of them. Now I have told my sister and bother they have to help them because I get so stressed out that I am making myself more ill. I think they are a little upset because I have always been the one who have been there to care for everyone elses needs and know I can't. My husband and kids said they aren't going to sit back and let me but myself at risk because I am tring to take care of someone else. I am sorry for rambling on but I hope someone out there can help me deal with this illness better than I am. I guess I was dealing with it better until I went to the doctor about a month ago and found out about my kidney and that this is getting worst and now I am scared. Before I told my family not to worry that I wasn't going to go any where because I was going to fight this. Now I can't say that because I am scared and it's hard to make them think I'm not. It's hared to hide it. I also have calcium bumps that my grandkids don't like. I have a good size one on my right wrist they always ask if I can't get it cut off. That makes me feel bad to so I trie to hide that from them. Well I guess I have rambled on long enough. If someone can relate to me please write back.
THANK YOU SO MUCH FOR READING. Deb.
address: kagordon@hotmail.com
type: systemic (diffuse or CREST)
Date: 09/12/02
Time: 12:18 PM
Hi, I'm Karen from New York. I'm 48 years old and have been diagnosis for about 10 months. I'm looking in New York who would like to have an email conversation about our medical condition.
address: mulgurl@hotmail.com
type: systemic (diffuse or CREST)
Date: 09/11/02
Time: 08:20 PM
If Lisa from Boston whose e-mail is listed as 1star49@hotmail.com could please get in touch with me. I have tried to e-mail her with no luck our stories are very similar. God Bless all of You!
address: danellam@yahoo.com
type: localized (Morphea/linear)
Date: 09/09/02
Time: 11:45 PM
Our 10 year old daughter was diagnosed last year with generalized morphea. Since then it has progressed to cover large areas of her abdomen, legs, right arm and hand, neck and back. She is getting the first signs of it on her face. We have recently taken her to UC Davis Medical Center for treatment. We were told that this was caused by a tic bite and is similar to Lyme's disease in its reaction and treatment. They have ordered antibiotic treatments and creams that they say they have had great success with and that all her spots should be gone within 2 years. Have you been able to find treatment for that was successful? If you have any information that might be helpful we would love to hear from you. September-2002
address: zev19lexx@yahoo.com
type: localized (Morphea/linear)
Date: 09/08/02
Time: 10:22 PM
My name is Ashley. I was diagnosed with localized scleroderma when I was four, I am now 20 and have been in remission for over 11 years. Although I do not have many symptoms except the skin fibrosing and little joint pains, I am glad to know that there are others out there and I am not alone. My doctors used to tell me I was the only case they had ever seen. I have never known anyone else that has localized (I know someone with crest) and I now feel with all the new research there is hope for all of us who must endure the burdens of this disease. I am anxious to talk to anyone via email and offer someone to talk to and to find a friend in, and vice versa. God bless and never lose hope.
address: art4life@compassnet.com
type: localized (Morphea/linear)
Date: 09/05/02
Time: 12:01 AM
About 7 or 8 years ago I was dianosed with localized Scleroderma. Went to the dermatologist for months getting localized injections of cortizone, and using prednisone and other creams on the patch under my right arm. It continued to grow.
After six months or so the patch had grown quite large and another had started under my breast. In one visit I had 50 injections in the area of the scar tissue and I decided not to go back. Figured it wasn't doing any good anyway.
I went to my family physician for something else and told him I had Morphea. He was surprised and told me that he'd had a patient in South Africa who was in terrible shape with systemic Scleroderma and nothing they did could help her.
Then they read about a Dr. in France who used Colchisine (a medicine used for gout). They tried it and she had gone into complete remission.
I started taking Colchisine (it is not too pleasant because it causes diarrheah when taken in large doses) and within a few months the scar tissue began to disappear.
I was in remission after a year or so so I stopped taking the Colchisine.
Last spring I found a new spot under the same arm and have been taking the Colchisine again.
The spot has been growing, but I may be slowing it down. I can only hope.
I just wanted to pass this along so that perhaps someone else could get some relief from it.
Linda
address: buckty1@msn.com
type: localized (Morphea/linear)
Date: 09/02/02
Time: 10:14 PM
My 22 year old son was diagnosed at age 10. His feet and ankles have given him the most trouble. He has chronic ulcerations. Does anyone else have this kind of problem? How do you deal with the pain and poor healing? Please contact me with suggestions as our doctors are no help at all. Mimi
address: buckty1@msn.com
type: localized (Morphea/linear)
Date: 09/02/02
Time: 10:13 PM
My 22 year old son was diagnosed at age 10. His feet and ankles have given him the most trouble. Does anyone else have this kind of problem? How do you deal with the pain and poor healing? Please contact me with suggestions as our doctors are no help at all. Mimi
address:
type: systemic (diffuse or CREST)
Date: 09/01/02
Time: 03:13 PM
address: paminhendersonar
type: systemic (diffuse or CREST)
Date: 08/31/02
Time: 05:32 PM
I have diffuse scleraderma. I WAS diagnosed in 1998. Am anxious to hear from others.
address: dreichard@toad.net
type: systemic (diffuse or CREST)
Date: 08/31/02
Time: 03:30 PM
Hi all
Been reading all the post it and I was wondering if there is anyone out there from the Baltimore, Maryland area. I have a support group which consists of a group of ladies who all have Scleroderma in one form or another. We meet monthly and if you are from the area please contact me, via my e-mail address.
address: cathye_99@hotmail.com
type: systemic (diffuse or CREST)
Date: 08/29/02
Time: 08:48 PM
I am 40 years old and on 7/30/02 I found out that I have scleroderma(systemic sclerosis). I have had test done on my heart, lungs and alot of blood work and everything has came back normal. I have tightin of the skin and all my joints hurt. I have alot of trouble using my hands. I would like to know more about this and what I can expect in the feature.
address: bonolee4u@yahoo.com
type: systemic (diffuse or CREST)
Date: 08/29/02
Time: 07:04 PM
I would like to hear from people that are having problems with their teeth and gums.My sister-in-law has scleroderma and she having a hard time with her teeth and gums.Thank you,Bonnie
address: bevroberts@prodigy.net
type: systemic (diffuse or CREST)
Date: 08/26/02
Time: 10:26 AM
Could someone answer a question or two? I have been very ill for 13 years, and the list of complaints, dysfunction, and diagnoses grows longer every year(too long to list). I wonder if maybe I've really had scleroderma all this time, because I sure have many of the symptoms I'm reading about. If you don't have the thickening of the skin, can you still have the systemic scleroderma? Do you have "spells" where a certain part of the body is really bad, then becomes less severe (although still a problem)? Is having a weak immune system a symptom? (I'm on antibiotics constantly - can't fight infectioN). How do you get diagnosed? is there a blood test? I appreciate your time and help.
address: skategirl813@aol.com
type: systemic (diffuse or CREST)
Date: 08/25/02
Time: 09:57 PM
This is such a horrible disease. I hope one day they find a cure for this. Is there anyone out there who is in remission? Or who have had any positive results? If so could u please email me!! I really hope someone will respond! God Bless to all of you.
address: skategirl813@aol.com
type: systemic (diffuse or CREST)
Date: 08/25/02
Time: 09:56 PM
This is such a horrible disease. I hope one day they find a cure for this. Is there anyone out there who is in remission? Or who have had any positive results? If so could u please email me!! I really hope someone will respond! God Bless to all of you.
address: toberva@yahoo.com
type: localized (Morphea/linear)
Date: 08/22/02
Time: 12:52 PM
My son, Erik, just turned 13 and has been diagnosed with scleroderma. Nobody seems very concerned, so I don't know exactly what this means. He also has Renaud's, but he isn't being treated for that yet. He has quite a few of the CREST symptoms, but they have ruled that out. As a boy, he's a very active climber.. (makes most moms very nervous) but I can see his fingers curling up. If they all do that, it will take away one of his favorite passions. I hope someone will respond!
address: rainnwach32@aol.com
type: systemic (diffuse or CREST)
Date: 08/20/02
Time: 08:16 PM
it's a very unforgiving disease. It took the life of my sister 4 months ago. She was only 36.She fought a brave battle for 7 yrs.
address: mvc9955@msn.com
type: systemic (diffuse or CREST)
Date: 08/17/02
Time: 02:26 AM
Hi, We all seem to feel the same way. It is nice to read that others feel the same as me. I am a 47 year old ex-teacher. I have 3 children all in college. I have had scleroderma for 6 years now. I can get around ok but have trouble grabbing. I have watched it progress over the years and refuse for it to let me down. Recently I am having trouble sleeping because of the itching and skin pain. My hands swell alot especially when the weather changes. I sure would like to know what is out there for me to try to relieve the tightness and itching. Thanks you all for being there!
address: mvc9955@msn.com
type: systemic (diffuse or CREST)
Date: 08/17/02
Time: 02:25 AM
Hi, We all seem to feel the same way. It is nice to read that others feel the same as me. I am a 47 year old ex-teacher. I have 3 children all in college. I have had scleroderma for 6 years now. I can get around ok but have trouble grabbing. I have watched it progress over the years and refuse for it to let me down. Recently I am having trouble sleeping because of the itching and skin pain. My hands swell alot especially when the weather changes. I sure would like to know what is out there for me to try to relieve the tightness and itching. Thanks you all for being thetr!
address: skiing4life430@aol.com
type: systemic (diffuse or CREST)
Date: 08/16/02
Time: 02:50 PM
My Granpa has scleroderma is there anyone out there who is in remission or has had any positive results or advice to please email me!!!! thankyou
address: SCAROLINARED@AOL.COM
type: systemic (diffuse or CREST)
Date: 08/15/02
Time: 09:18 PM
MY SIS IS 49 AND HAS JUST BEEN TOLD SHE HAS THIS WOULD LOVE TO HEAR FROM OTHERS AND OR GET ANY INFO ON THIS THAT I CAN GET she has been getting worse over the months and now has bad open places on her hands and arms that wont heal,please help me with any info about this diease.
address: gibsonflo@aol.com
type: systemic (diffuse or CREST)
Date: 08/14/02
Time: 07:12 AM
HI THERE EVERYONE JUST WANTED TO SAY HELLO TO EVERYONE AND THE ENCOURAGEMENT THAT I HAVE RECIEVED THROUGH THE WEBSITE,IT IS JUST A REALLY GOOD FEELING TO KNOW THAT I CAN COME ON HERE AND TYPE MY FEELINGS OUT AND KNOW THAT OTHERS WILL RESPOND,OR HAVE HAD THE SAME EFFECTS OR THINGS HAPPEN TO THEM AS I HAVE HAD.I AM ONLY 26 YRS. OLD AND I HAVE HAD SCLERODERMA FOR 5 YRS. NOW, EVERYDAY IS A CHALLENGE-BUT THEN AGAIN EVERDAY IS NOT TERRIBLE I HAVE LEARNED TO MANANGE WITH MOST OF IT, WITH KIDS YOU LEARN TO ADJUST REALLY QUICKLY[LOL].A POSITIVE ATTITUDE AND A LOT OF REST WILL GO A LONG WAY.KEEP YOUR HEADS UP-TAKE CARE AND BE STRONG ALL---KIM:0)
address: whitneygwenallen@aol.com
type: systemic (diffuse or CREST)
Date: 07/30/02
Time: 06:20 PM
My sister was diagnosed about 4 years ago. She is currently 29 years old, in love and about to marry a wonderful man who takes compassionate care of her despite her many trips to the doctor and hospital visits.
I would like to know the following things: 1) Has anyone known anyone who has had a child with this illness. 2) I have heard that pregnancy can have remissionary effects on schleroderma- has anyone else heard this or experienced this? 3) What is the status of the South Boston Health study? There is evidence of an epidemic breakout in that area- and I'd like to find out more information about what may have caused this. 4) I'd like to take an informal poll on how many people that have this disease are in the health field. My preliminary research shows a strong percentage of people affected by the disease are in this field and again, i wonder if there is some sort of correlation.
All my prayers and thoughts are with all of you - hope is the best medicine -don't lose it!
I love my sister very much and want to learn as much as I can about how to keep her health and happy.
address: skiing4life430@aol.com
type: systemic (diffuse or CREST)
Date: 07/29/02
Time: 10:01 PM
Hi my name is Jen and my grandpa was diagnosed with scleroderma. He was misdiagnosed by 17 doctors before they finally found out what he had. It has horrible to see him go through this. They have tried many drugs but nothing seems to work. Right know he's getting methotrexate in shot form and in the next couple of days he will be trying the remakaid. He is in so much pain and is trying to find something that will work. He can barely use his hands anymore they are very cold and curled up. He cant bend down anymore, he can barely do anything. If there is anyone out there who has had any positive results or advice to please email me. Thankyou
address: abluebird31@aol.com
type: systemic (diffuse or CREST)
Date: 07/15/02
Time: 03:58 PM
Hi, my name is Joan, I am 45. In September 2001, I was diagnosed with Scleroderma. That was just the beginning of the problems. My blood pressure was out of control (198/111 -- stroke territory). Here's the chronology (from September 2001 to January 2002): Congestive Heart Failure Seizure due to high blood pressure Pericardial Window surgery Cardiovert for arrithymia Renal Biopsy -- determines renal failure from scleroderma Potassium overload correction Congestion in lungs and edema Fistula shunt done in right arm (No blood draw, I.V. or blood pressure readings) Through all this, my hands have become “clawed” and I cannot use my right thumb due to the malformation of my joints. I cannot hold things, I have special grips to open some bottles and due the renal failure, I must monitor my liquid intake and have monthly blood tests. My meds are a mix of high blood pressure meds, ACE inhibitors and Beta-blockers. My diet is unbelievable, as I must follow a low sodium, renal diet. It is so bland and boring that I no longer eat out or go to anyone’s home for a meal. As I am no longer working, my social life has been shut down. Also, as I am single I have to rely on myself or a family member (when they are able) to assist me if things need to be done. My fatigue is constant and great. I can really only do one thing – water the garden, general cleaning, out of the house activities – a day. Walking a flight of stairs is a chore; going up is not too bad but going down I have to go one step at a time and that is not acceptable in this world!! My greatest fear is falling. I cannot bend my knees like the rest of the world. The time I did fall it took two people to pick me up (and I an not overweight) but I did get a bloody nose. But on the bright side, I fell right near an ambulance (I was waiting in line for tickets!)! Also, I know my future contains dialysis. I dread the reality of it. When I was told my kidneys had failed, I fell apart. I was inconsolable – it was my worst fear come true. The doctors were so cold and impersonal when they told me. My primary care physician is the most wonderful doctor and person (thank you, God). I told him I would be his challenge and he has taken on each event and setback and recovery and helped me through it. I hope to continue keeping dialysis at bay. I can deal with the difficulties with my hands – the numbness, the cold, the cuts, and the pain in my useless right thumb. Does anyone else have dry skin patches? Has anyone else had this many problems? I didn’t see many mentions of kidney failure. Thanks for reading.
address: rodgerson@earthlink.net
type: systemic (diffuse or CREST)
Date: 07/12/02
Time: 07:49 AM
I have just lost a cousin on 7/01/02 to CREST. Unfortunately, her doctor would never send her to specialist and her family had no idea what to do. She had 40 surgeries to check her esophagus. I just checked to see if there were any support groups for her family, who are having a very hard time understanding all of this. They live in Wisconsin and they could really use someone to help them understand what happened to their only daughter. They are very angry also that their doctors never sent her to specialist and I'm sure feel very guilty about not pushing for that. If anyone can help me help them I would very much appreciate it. I am in South Carolina and can not be there for them personally, but will pass on any info I can get. Thank you.
address: tekakwitha2000@yahoo.com
type: systemic (diffuse or CREST)
Date: 07/07/02
Time: 10:35 PM
wow great site....there is so much going right now...i really don't know where to start..i have systemic..with lung involvement..reflux..and i was just diagnosed with trigeminal neuralgia...fun...but life goes on...charlotte
address: cskon@hotmail.com
type: systemic (diffuse or CREST)
Date: 07/05/02
Time: 12:39 AM
My name is Chris and I have just recently been Dx with Systemic Sclerosis. I am in a lot of pain almost all the time and am looking for anything I can do to help deal with this both physically and emotionally. Currently I am taking Morphine, Percocet, Nexium, Methotrexate, & Folic Acid. I am also a Type 1 Diabetic of 14 years and a Asthmatic for over 20. I am looking for anyone who can give me advice, tips, tricks, whatever to help me adjust, deal, and live with this. Currently I am in the waiting process with Social Security and God willing won't be waiting too much longer. Anybody that has any info would be greatly appreciated or even someone who is looking for a pen/e-pal to chat with. I make it day to day focussing on the things that I can do. I know it isn't much for advice, but since it does work for me, it might work for someone else. I try to stay very positive, but like anything out there, eventually you need a "boost" to keep going.
address: lancey@bigpond.com.au
type: systemic (diffuse or CREST)
Date: 07/02/02
Time: 11:24 PM
Hello everyoneIts Michelle from W.Australia I havent written for a while.I have recently started to see a rheumatoligist who has put me on PLAQUENIL,Ive been on it now for three weeks it seems to be upseting my stomache.Hopefully it will pass,because it does seem to help with the aches and pains.I would also like to say that this web site is a very big help for people with this awful disease,I personally have more answers here that with my docters,most know very little. Any of you that would like to have someone to talk too,please feel free to email me. Take care of yourselfs,and stay warm, from Michelle x
address: kensuede@aol.com
type: systemic (diffuse or CREST)
Date: 07/01/02
Time: 08:16 PM
Hello! my name is Cherri. My friend has Scleroderma and was dx about 7 years ago. She had it from her friends until it was apparent. She is a very special person and I wish I could help her. She suffers alot from her fingers(ulcers) and her feet. We had to put her in the hospital over the weekend for CHF(congestive heart failure). I am not sure if that is from the SD and is the course. I wish I could make her more comfortable, any suggestions? It really hurts her alot to touch her, but she doesn't complain. She has refused to see any of her friends for the last 9 months, finally last saturday she let me see her. I have strong faith, but my heart hurts. My friend is 72yrs old and decided not to have any heroic measures taken. This is such a cruel disease. My prayers are with you all.
address: ugoihgoujkgj
type: localized (Morphea/linear)
Date: 06/28/02
Time: 10:47 AM
hello,i am mentally challenged and i hav been for my whole life because of a lack of oxygen.i am often made fun of,called names and it hurts me to here them.
address: ugoihgoujkgj
type: localized (Morphea/linear)
Date: 06/28/02
Time: 10:47 AM
hello,i am mentally challenged and i hav been for my whole life because of a lack of oxygen.i am often made fun of,called names and it hurts me to here them.
address: ugoihgoujkgj
type: localized (Morphea/linear)
Date: 06/28/02
Time: 10:46 AM
hello,i am mentally challenged and i hav been for my whole life because of a lack of oxygen.i am often made fun of,called names and it hurts me to here them.
address: doso@ncia.net
type: systemic (diffuse or CREST)
Date: 06/27/02
Time: 07:51 PM
Hi, was diagnosed over six years ago with MCTD/ but my doctor now believes scleroderma. Facial neuralgia is the worst pain but I am determined to have the attitude "out of sight, out of mind" I guess it does help. Anyone with the neuralgia and any tips on that? Thanks
address: NICOLA
type: systemic (diffuse or CREST)
Date: 06/27/02
Time: 05:27 AM
address: gibsonflo@aol.com
type: systemic (diffuse or CREST)
Date: 06/21/02
Time: 01:14 AM
HELLO EVERYONE! I WANTED TO LET EVERYONE KNOW HOW MY TREATMENT IS GOING WITH THE CYTOXIN CHEMOTHERAPY THAT I HAVE BEEN TAKING FOR THE LAST 6 MONTHS --AMAZINGLY MY LUNGS HAVE IMPROVED ABOUT 40% IF NOT MORE AND I AM REALLY HAPPY ABOUT THAT.I NEVER KNEW IT WAS WORKING UNTIL THE PULMONARY FUNCTION TESTS SHOWED IT--THE SCAR TISSUE IN MY LUNGS IS LEAVING AND I HAVE NEVER BEEN HAPPIER-OR FELT HAPPIER-I SEE A NEW OUTLOOK FOR THE FIRST TIME IN A LONG TIME.IT IS WONDERFUL.I FEEL THAT NOW I HAVE A NEW SOMEWHAT LEASE ON LIFE MY HANDS AND SKIN ARE BEGINNING TO SOFTEN UP SOMEWHAT AND I CAN USE MY HANDS AGAIN AND THE ULCERS ARE ALMOST GONE--I HAVE THIS "NEW-FOUND"-ENERGY THAT ONLY GOD ABOVE KNOWS WHERE IT HAS COME FROM.I HAVE MET SO MANY LIFE-LONG FRIENDS ON HERE, AND AM GREATFUL EVERDAY FOR THIS WEBSITE-IT IS SOMEWHAT INSPIRING. I WOULD LOVE TO HEAR FROM ANYONE OUT THERE GOING THROUGH THE DISEASE -ANYONE WHO KNOWS SOMEONE WHO HAS OR JUST ANYONE WHO WANTS TO ASK ME QUESTIONS I WILL ALWAYS WRITE BACK AND LOVE TO MEET NEW PEOPLE. I AM STILL LOOKING FOR OTHERS IN MY AREA AROUND KENTUCKY BUT I WILL CHAT WITH ANYONE --EVERYONE TAKE CARE AND BE STRONG---UNTIL NEXT TIME KIM:0)
address: mmousseau@pineridge.aberdeen.ihs.gov
type: systemic (diffuse or CREST)
Date: 06/20/02
Time: 10:17 AM
My question is; has anybody found out what diet works the best for them. I've looked all over the net and libraries and there is absolutely nothing on what to eat and what not to eat when you have scleroderma. Please let me know. Thanks, MM
address: kminniek29
type: localized (Morphea/linear)
Date: 06/18/02
Time: 08:13 PM
i have this desease mine started on my leg the skin is very thick i am looking for some kind of info on treatment i am in pain most of the time i am 64 years old
address: mastantuno@aol.com
type: systemic (diffuse or CREST)
Date: 06/16/02
Time: 10:56 PM
my 70 yr old mother (diagnosed 4 yrs) with scleroderma will be put on chemotherapy pill within the next few weeks. am looking for info from anyone on this medication (i.e., side effects, how its working, etc.). thank you
address: tr209@yahoo.com
type: systemic (diffuse or CREST)
Date: 06/15/02
Time: 01:50 PM
I'VE SD FOR 10YRS NOW ITS BEEN TOUGH BUT I AM STILL HERE. I AM NEW TO THIS CHAT THING BUT WOULD LOVE TO LEARN HOW. I ALSO ENJOY LISTENING TO OTHERS ABOUT THEIR LIFE THATS HAD TO CHANGE DUE TO THIS UGLY ILLNESS. ANYONE WHO WANTS TO CHAT ABOUT THIS WITH ME CONTACT ME, I WOULD LOVE TO HEAR YOUR STORY AND OFFER SOME HELP IF I CAN.
address: angelmae_8@hotmail.com
type: localized (Morphea/linear)
Date: 05/30/02
Time: 06:24 AM
Hello! I really love visiting this site because through this i never feel alone. I was diagnosed to have localized scleroderma 3 years ago but it never bothered me, until i felt pains and realized that my energy level is deteriorating. I'm a hyperactive person, but i'm afraid i'm beginning to slow down now. I'm not only battling with the pain physically, but most of all, emotionally. I oftentimes get depressed without knowing why and my rheumatologist gave me antidepressants. But i stopped taking them because i don't feel good about it. I'm taking Prednisone and Methotrexate for almost a year already. Before, i stopped taking these drugs because i was very afraid of the side effects, but now i learned to trust my doctor. Sometimes, i experience pains in my joints, my arms gets swollen and i get very depressed. Many do not understand why i feel like this, and sometimes they find my sickness weird. I hope to find more information about this illness so that i could better understand myself and my body. Others think it's just in my head. I felt good when i read stories of others who have this same sickness as mine, because now i know that many of us are struggling and fighting this disease. May God, who is the Great Healer give us the strength not to give up, but to endure, because i believe we are blessed to share His sufferings. Thanks a lot! :-)
address: www.graham@3rivers.net
type: systemic (diffuse or CREST)
Date: 05/29/02
Time: 06:12 PM
Hi! My name is Anita; I'm 4o and have been diagnosed with systemic scleroderma with Raynaud's (CREST) since 1989. It is amazing to read your stories and see the similarities, yet individual complications with this difficult disease. The Raynaud's and esophagus strictures tend to show their physical signs after the constant trips to various dr.s about exhaustion and just not feeling well, not knowing what the underlying problem really is, meanwhile, treated like "it's all in your head". My heart goes out to all of us who have endured such frustrating emotions! Anyway, I'm always tired and am really slowing down these days. It saddens me not to be able to push myself or else I end up sick. I'm taking norvasc, prevacid, reglan, synthroid, sucralfate, tums, and mylanta at this time. My digestion has been the worst symptom for me so far, besides the Raynaud's. I just get so tired of the reflux & heartburn & nausea. I'm also having difficulty with stiffness in my knees and muscle spasms in my calves; I ache alot; have a poor appetite; have difficulty getting much accomplished in a day; and having trouble with my memory a lot more. I have 2 teenage daughters at home which are homeschooled and an older daughter in the army. Stress is a trigger for my disease, I'm super-sensitive and love peace in my life. My Lord & Savior Jesus Christ is my only peace! Through him I know that my eternal home is waiting for me and my saved loved ones! What a blessed future and spiritual joy today! May we all be sure that we'll be able to share our own personal scleroderma story with our new bodies in Heaven someday soon! Please write; I'd love to get to know you & encourage you, which in turn encourages me, too! May God bless you all dearly!!!!
address: sue56sie @aol.com
type: systemic (diffuse or CREST)
Date: 05/28/02
Time: 06:49 PM
I was diagnosed about three years ago. Could anybody out there let me know of any good doctors in the Pittsburgh, PA area. Thanks.
Sue
address: j.charlie.uk@talk21.com
type: systemic (diffuse or CREST)
Date: 05/28/02
Time: 02:31 PM
My mother was diagnosed with scleroderma last year. She has the usual problems with breathing, skin problems, eating and pain particularly in her back. I'm based in the UK. Is there any others posting from the UK. Please e-mail
address: wazzzuplildude@yahoo.com
type: systemic (diffuse or CREST)
Date: 05/22/02
Time: 12:30 AM
Hello, my name is Joe I'm 14 years old. My mom has scleroderma. It makes me feel sad,I don't want her to die. I love her dearly, I know God will heal her one day,I hope it's very soon. Sometimes I can't bare it just watching her live with this disease. I don't want the Lord to take her from me and my dad, but if it is His will, then let His will be done. After the years I kind of learned to live with by avoiding the truth and not trying to think about it. I feel very sad, I try not to show it but sometimes when no one is looking, I cry. Well I hope this encouraged you at least a little. If you are going through the same thing, feel free to email me at; wazzzuplildude@yahoo.com/lilpun16@hotmail.com
address: lulu@colosseum.com
type: localized (Morphea/linear)
Date: 05/21/02
Time: 08:55 PM
I was diagnosed with morphia two years ago. it started with a lump on my elbow and now it spread to my entire are and finger...I have no movement in my arm and finger...It hit my upper back and went towards my breast...I have been to so many doctors and they say the same thing over and over if anybody can e-mail me asap i would appreciate it...this is my first time that i am writing to simular people...e-mail me so i can relate to some of you...this illness is physical, emotionally, and also i am hooked on pain killers...god bless you all...thank-you for listening....
address: erothe@seagate.com
type: systemic (diffuse or CREST)
Date: 05/14/02
Time: 09:53 PM
My name is Erika and I am ooking for information about Scleroderma. My mother-in-law was just diagnosed in March (2002) after a long battle with polycystic kidney disease, kidney failure, and ongoing dialysis. I know that her feet and hands are affected, so I assume it is of the "diffuse" type. Can anyone out there relate any successful treatment methods and point me to a site or resource where I might find out more about this condition, how it progresses, what one can do to stop or slow it down, etc.? Thanks so much for sharing and helping others cope and understand. -Erika
address: SLY78_200246036@Yahoo.com
type: systemic (diffuse or CREST)
Date: 05/11/02
Time: 11:47 PM
I was diagnosed in 1998 at the age of 33 on my birthday at that. I have had just about any and everything told to me about this illness. I thought. But now I know Im not sure.
address: Smcgrory@aol.com
type: systemic (diffuse or CREST)
Date: 05/11/02
Time: 12:05 PM
Hello, My mom has scheroderma going on 4 years now. She is now 57 and though she tries to be unseemingly optomistic, she can't help but to show her true pain every now and then. I would like to know for those of you who have the painful ulsers on your fingers what you can suggest that may help my mom at this time. She has a new grandson, my son, Andrew and adores him so. She cries cause she can't do everything she always imagined she could. As sad as she gets, he is medicine for her and brightens her world. Any suggestions would be appreciated!!! May God Bless You All!!!!
address: daisy1821@hotmail.com
type: localized (Morphea/linear)
Date: 05/08/02
Time: 02:18 PM
My name is Kris and I'm 18 years old. I was about 10 when I really noticed the three patches on the left side of my stomach. Two were more prominent than the other and when I went to the dermatologist and was diagnosed they found three more spots, in my underarm, the inner side of my right breast and as well as on my rear-end. They are all different forms, the one in my underarm is dominantly white, the spots on my stomach are tan and used to be purpleish and the ones on my rear-end look as if I have small barely noticeable bruises. I used a topical cream for a few months and then stopped. The disease has seemed to have been regressing although it is still very much there. I was told it would disappear by the time I was 25...im patiently waiting. Everyone always asks why I have bruises on my stomach but it doesn't bother me...it never has. Its always been an eccentricity that I dont mind sharing with others.
address: JBRADGUN@AOL.COM
type: systemic (diffuse or CREST)
Date: 05/08/02
Time: 02:05 PM
Hello, My name is Ginger. I was first diagnoised in 1984 at the age of 24, I am 41 now. I have raynauds, my hands turn purple and blue, so I painted my bathroom those colors.Not real pretty. I have been on cytoxan for two years for pulmonary fibrosis at the Vetrans Hospital in Tampa Florida. I call myself "Queen of the Telangiectasias (red dots), over 2000 at last count. People think I have the measles or something, so I just say"sure sounds good". I just try to have a good attitude and blow off the small stuff that life deals us all. Try to laugh alot, I find having a sense of humor always helps. Eat well and drink lots of water. Tell your family and friends that you love them, often! Please feel free to write I love to chat. Take good care of yourself.
address: miss_derby@yahoo.com
type: systemic (diffuse or CREST)
Date: 05/08/02
Time: 02:04 PM
I am seeking help from you. I know of a 14 year old girl who has recently been diagnosed with scleroderma. Her grandmother passed away from it, and her father has it as well. She has been watching him enter deeper stages day by day. Needless to say, she is torn apart inside. She enjoys reading, and I welcome any suggestions of books, information or support groups for *teens*. Thank you so much for your time. You can email me at miss_derby@yahoo.com.
address: surgro@sentco.net
type: systemic (diffuse or CREST)
Date: 05/03/02
Time: 02:48 PM
Hi again. Just wanted to let you know that my Mom passed away March 21, 2002. Myself and my 2 Aunts (Donna & Annie) flew out to Arizona in February to see my parents and that was the best decision in my life. We also seen them when they came back home March 16 till the day that she passed away. You don't realize how much a person means to you until they are not with us any more. It has been really hard for me. Thank God I have a wonderful husband and relitives to lean on. I have met a really great friend on this site. Her name is also Kim. It is great to share my life with her and her family. It really means alot to be able to call or email her because she knows what I am going through. Talk to other people it really helps. I never thought of my Mom passing away at the age of 62. Both of my Grandmothers lived to be 92 and in good health till their last few days. I guess I thought my Mom would always be there for me for a long time. It was long but by far not long enough. Take care everyone and Kim, I will be talking to you soon. Bye, Kim
address: breidfl@attbi.com
type: systemic (diffuse or CREST)
Date: 05/02/02
Time: 02:11 AM
My mom is in her 70s and was just diagnosed with limited cutaneous form. So far, no system involvement, just badly swollen and dense hands and feet and lower legs. It came on quite suddenly since about 4 months ago and has gotten progressively worse. She complains of immediate bad reaction when she goes into her new apartment, refuses to live there, and I think she believes it is the cause or at least some kind of trigger for the disease. Does anyone have experience with an immediate type of reaction that makes the symptoms worse. I don't mean to say she is imagining it, but there are no allergies and the doctors cannot validate it. All I want is to understand and help! Thanks everyone for sharing. I have learned alot about this here, and also about alot of very special people. Thanks, Betsy
address: cablegal2002@aol.com
type: systemic (diffuse or CREST)
Date: 04/30/02
Time: 07:37 PM
http://www.watchtower.org/library/g/2001/8/8a/article_01.htm
Story on Scleroderma, titled; "My fight with Scleroderma".
address: peggysuetwo2002@yahoo.com
type: systemic (diffuse or CREST)
Date: 04/30/02
Time: 11:42 AM
i have had MCTD 20 yrs without beind dx. hopefully i will be soon.i'd like to share my symptions and hope that some of you can identify with them. no muscles work in the esophagus,it is scarred and i have acid reflux. get chocked alot,I have IBS,dry eyes and mouth, also a very small mouth as of late,positive ANA,stay very cold especially hands and feet,some hair loss,red sore places on fingers right behind the nails, some hearing loss,joint pain. fatigue,muscle weakness,swollen hands and feet,my fingers curl under some' hands gets numb at times,have dental problems,have lossed all upper gums and bone in upper jaw,all the way to the sinuses i don't have much skin involment except hands and feet.i had pneumonia a year ago and since then i have alternating periods of feeling real hot or cold, this is my most concern, i have serve memory loss and stay very confused.do any of you identify with this i also have serious deppresion,am diabetic. sorry for the long message but i'm desparete for some answers. thanks and GOD bless.
address: bcrcuz@yahoo.com
type: localized (Morphea/linear)
Date: 04/26/02
Time: 12:05 PM
Hi, my name is Eric. I am 25 years old and have had this disease for almost two years. My symptoms started with aches and pain in my joints. It became difficult to walk, and some mornings even difficult to get out of bed. I was diagnosed with several different things from various doctors before one specialist finally discovered it was scleroderma. I thought it was only stress that was causing my pain because at that time I had the stress of an emotional divorce. I mean, it didn't make a lot of sense that I would have something like this happen to my body. I was an active person, I played golf and other sports. I had a very normal life, and then all of the sudden I found myself having trouble moving and doing the simplest things like putting on socks and shoes. My hands would no longer flatten out or make a fist, I couldn't run, I'd lost around 50 lbs., and had a hard time lifting things. With time, I have accepted that this is part of the plan for my life. I must take what I have been given and turn it in to something positive. We are all dealt a hand in this game of life, and we must stay strong, keep our poker face on and make the best of what we have. I feel much better now than I did one year ago, and I know this will never beat me. I hope that God will bless you all the way that he has blessed me with strong support from family and friends, and the promise that no matter what disease I may have on earth, I will someday be in a perfect body with him in heaven.
address: ksund97@hotmail.com
type: systemic (diffuse or CREST)
Date: 04/25/02
Time: 10:40 PM
My mom was diagnosed with CREST 3/2000. She had a car accident 11/99, her car was totalled. She had a strange event where her brain had swelling, 12/99. She had to go back for a follow-up 3/00 & a series of blood tests were done, including ANA. Her ANA, came back positive..CREST. This was a major surprise. In 97 she was diagnosed with GERD. Since the accident, alot of strange things have been happening, going down hill. She has asthma since 95.For that past couple of months, before 12/01, she starting coughing continuously, after many different tests, finally they listened and did a CAT-SCAN,3/02. This showed Pulmonary Hypertension/Fibrosis.The Rheum.Doc put her on Prednisone end-of-Jan for a couple of weeks. Taken off, the coughing starting again,finally the CAT-SCAN. Pulmonary doc spoke with Rheum.Doc and Rheum.Doc put her back on Prednisone on a much higher dose. She is starting to be dropped down.Coughing starting. Her face has swollen up and red. Rheum.Doc also put her on Cytoxan. With the Predni. dropping down, her face isn't changing. From research, the connective tissue in the face is affected, I have been trying to find some pictures to see if this is her problem. I forgot to mention prior she had sores in her mouth that was removed by an oral surgeon, again before diagnose of CREST, now scleroderma since spreading, or whatever. I see her rapidly changing, I am trying hard to get her help. I don't know what to do for her. It hurts, I can see her getting more and more depressed too. Her hands are tightening, she has problems walking, but won't admit. I really don't know when this all started. Every day when getting up, I wonder, what will today hold, changes or the worse. I discover the changes of her on my own, she don't tell, for instance, she has constant diarria (ok, spelling wrong), very lose urine, she takes all types of meds, for awhile, again before diagnose and it has gotten worse. On Monday she is going for a test of her colon, I don't know what I am going to do if there is something wrong. My dad died of colon cancer in 1997, diagnosed April, surgery May, complications....died October. How much more....Thank goodness for the websites and research. I tell the doctor what is going on, in tech terms. Only thing, you wonder, this is soooo bad. Worse part, no one knows where or how it starts. GOD BLESS ALL.
address: jhurst@midsouth.rr.com
type: systemic (diffuse or CREST)
Date: 04/19/02
Time: 05:16 PM
My name is Beverly. I am 62 years old and have had scleroderma for over ten years. I have just started to read about all those of you who have the same type problems that I have. I believe God sent you all to me. This is such a blessing> I am not kidding. Since I sent my art to amie and she is sharing with others on my web page, I feel like a new lease on life. It takes a lot for me to feel this good. After reading about all you precious sd people out there, I see myself in just about all of you. If I didn't have faith in my Lord, Jesus Christ, I would truly be miserable, but he has given me a reason to live. It's hard for me to type this. It's hard for me to do my drawings and paintings, but I do it any way. I have to. I pray for all of you, my precious sd partners. Thank you for sharing in this, horrible as it is.
address: 3bonos@sbcglobal.net
type: systemic (diffuse or CREST)
Date: 04/13/02
Time: 10:53 PM
My mom passed away Jan 26, 1998
address: rclinton@ing.net
type: systemic (diffuse or CREST)
Date: 04/12/02
Time: 01:38 PM
Hi everyone. After two rough years and two in remission, the Scleroderma is really giving me a hard time again. Have recently started a course of intravenous Chemotherapy with Cyclophosfamide, and am wondering if anyone else has tried, or knows of this treatment. The hoped-for outcome is skin softening and a halt in the progression of the disease, I am also wondering about the various reactions of the disease after each treatment. If anyone could provide any insights it will be greatly appreciated. Gina
address:
type: systemic (diffuse or CREST)
Date: 04/12/02
Time: 01:24 PM
address: rclinton@img.net
type: systemic (diffuse or CREST)
Date: 04/12/02
Time: 01:22 PM
to Derek in London, U.K. I am new to this great website & have just seen your message. An excellent source of info in your part of the world is the Raynauds & Scleroderma Assoc. Highly recommend you check them out at http://www.raynauds.demon.co.uk E-mail webmaster@raynauds.demon.co.uk
address: lstar49@hotmail.com
type: systemic (diffuse or CREST)
Date: 04/09/02
Time: 08:49 PM
Hi my name is Lisa. I am a 38 female who is half black and native American. I have had scleroderma for over 10 years. I live in Boston,Mass. I still work full time and have two children age 16 and 13. I have been feeling well for over 8 years but am now being tested for Multiple Sclerosis which has some similar symptoms to scleroderma. I have good days and bad. My mother died 6 years ago from complications of having this disease for over 20 years. I also have a first cousin with this disease. I'm glad that I found this site. God bless us all and good luck!
address: ddsfab3@optonline.net
type: systemic (diffuse or CREST)
Date: 04/09/02
Time: 10:50 AM
Hi, my name is Denise and I am 42 years old and am in the early stages of diffuse scleroderma. I have come to terms with this(do I have a choice?) but am trying to stay optomistic. I have just started medication(methotrexate) along with Nexium(GERD) and Norvasc(for the Raynaud's). I would like to hear from anyone who is on methotrexate, and how successful it has been in slowing your disease; or anyone else with this awful disease is welcome to email me at ddsfab3@optonline.net. Thanks.
address: Bowler1mom@comcast.net
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 08:14 PM
Hi my name is Edna, I am 38 and have had scleroderma for the past 12 years. I was first diagnosed with raynauds phenomenon. It has been a painful time and yet I am very thankful to GOD for the healing that has taken place since I am Born Again. I think alot of our healing has to do with our attitudes and our beliefs. Since I have found the Lord I have been blessed with amazing strength and healing. I'm not saying I have no more pain, it just hasn't taken over my life like it did before. I now have someone to unload my burdens on and in my lowest and painful times I know I can lift my troubles up. GOD really is a loving and HEALING GOD!!!!! I urge all of you you to give your life back to the Lord and you will be amazed at the affect it will have on you.
address: cfenton9@cs.com
type: localized (Morphea/linear)
Date: 04/08/02
Time: 08:13 PM
My name is Linda, and I am 9 years old. I had a small bruise on my back when I was 2 years old. I now have patches everywhere. My doctor is giveing me methothexate and calcium. I like to go hiking and take my dog for a walk, I also like swiming. I like music and playing my flute. My grandmother takes me shopping. I tell my friends I have a disease.
address: bu@westserv.net.au
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 08:08 PM
Hi..I am Dawn and I live in Australia..firstly what a great site..I thought that there were not many of us. Thank you to those of you that shared your story. Praise God I am in better shape than most..diagnosed 10 yrs ago (am now 55) and have had remissions often. Hands,feet, liver and of course oesophagus not so good but not as bad as others. The reason I am writing is to see if anyone knows where I can get leather gloves made. I have large hands and with our climate it is very difficult no impossible to get gloves that fit me in Australia. Any hints on how I go about this would be appreciated. My prayers are with you.. God bless...Dawn
address: wabbitnmouse@aol.com
type: localized (Morphea/linear)
Date: 04/08/02
Time: 08:07 PM
Hello, I am a 30 y.o. female living in Vermont. I was diagnosed with Scleroderma 7 years ago. It started with small rough spots on my hands and neck. Now 7 years later, I have almost no use of my left hand- and my neck- chest and leg are covered with patches. My fingers have fused and I am not able to move them. I have adjusted and accepted my state of health, but pray that it will not get any worse.
address: lancey@bigpond.con.au
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 08:06 PM
Hi my name is Michelle,Im from Western Australia(luckely,its warm most of the year). I was recently diagnosed with CREST,but have had Raynauds since I was about 26,It got worse over the years,and after numerious tests I was diagnosed.The speacialist I was seeing told me to look up CREST on the net.I would know nothing if it was'nt for the information I have found on various web sites.No docters or so called specialists seem to now nothing of this disease. It really was good to find out I was not alone.It is all very scarey,and if their is anyone out there that knows of a support group,anywhere in W.Australia please let me know. I am still coming to terms with this,most of the time I just try to block it out. I am very happilly married with two girls,10 and 5yrs,they are a bit too younge to understand yet so we havent said much to them.I am going to continue to read as much as I can so that I can come to some understanding of what mine and my families future holds.After reading what some of you are going through,my case so far is alot milder.Thanks for listerning, Michelle.
address: zora_precious@Hotmail.com
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 08:03 PM
Hi, I consider it a blesing to be able to commuicate with those who also understand this horrible disease. I've been newly diagnosed. This is totally new to me. I am experiencing blotchyness on my face, neck, chest and back area. Currently Iam enrolled in an Ultra-Violet Light Clinic. The treatment is suppose to surpress the progression, swelling, and discoloration. Any suggestions for a good cover-up/make-up is appreciated. I am a 48 year old , Black female
address: lil_cheergal@yahoo.com
type: localized (Morphea/linear)
Date: 04/08/02
Time: 08:00 PM
Hi, my name is Maria. I live in Colorado and I am a freshman in high school. I am 15 years old. At my high school I am on the cheerleading squad, which I love to do and it is really fun! I also love to dance and swim. I have morphea, and I have had it since I was 6 years old. None of the doctors I see now what is the cause. Sometimes I think its getting better and sometimes I think it is getting worse. I have it on my right side of my face. It starts on my right side of my chin and goes all the way down my neck. Then I have a small spot next to my right eye, and then a really light spot on my cheek. I have done many things to make it get better. I use creams, I have done laser treatments, and I have also gone all the way to Toronto, Canada, because they have a special machine there that helps morphea. I have read some other stories and they are really sad. I'm going to continute to pray for everyone that has morphea and scleroderma. Thanks for listening -maria
address: lilbit_25_1976@yahoo.com
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 07:59 PM
hi my name is Phyllis iwas diagnosed with diffuse Scleroderma sans Scleroderma about a year ago i am only 25 years old and i have two children that are only 5 and 9. i first had the blue fingers and toes now i have tightening on my face and i have developed pulmonary fibrosis a severe restrictive lung disease i am fully disabled and was told i wouldnt see 30 any advice?
address: jyoung55@charter.net
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 07:58 PM
I was diagnoised with scleroderma 10 years ago. It has now affected my small intestines. It causes severe constipation and none of the medicine that I have taken seems to help. I wondered if anyone else has this problem, and if so, what they were doing for it.
address: faithnhope60623@yahoo.com
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 07:57 PM
Hi, My name is Maria I'm 35 years old and I was diagnosed with Scleroderma in 1996. They believe it's CREST but they're still not sure. One of the first symptoms I noticed was Raynauds and some joint pain. They drew some labs and it came back positive. I was sent to a Rheumatologist for consultation and treatment. I was started on different meds. for pain, Raynauds and also anti-depressants. It was all so scary to me, I cried and I was depressed but I never told anyone I was afraid.The medicine was'nt helpnig much and I didn't like the idea of being on anti-depressants, so I stopped taking them. Since then I'ved developed even more symptoms; joint pain, swelling and stiffness, extreme fatigue, heartburn,dry eyes and mouth , weak and painful muscles and many more, I've also switched Rheumatologists a few times but I really feel that this one is the right one for me. They are running more tests, they want to create the right treatment for my symptoms and they are also concerned about getting support for their patients. They also said it's important to cut the stress level in my life. I work in the medical field so that's kind of hard to do but I try. Also my co-workers are supportive and understanding which is a tremendous help to me. As far as support at home, my husband cooks once in a while but I think I get more support and understanding from my thirteen year old ,so sad to say but true. I have two sisters who have been very supportive and encouraging. I thank God for all of them, for their support and prayers. But most of all I thank God because He has been my true souce of support, peace, joy and comfort and most of all strenght. Don't get me wrong I still get depressed every now and then, I cry alot and sometimes I cry my self to sleep because of this horrible pain. But then I remember who God is and what He is able to do and it brings me comfort knowing that His Grace is sufficient for me. And as long as He is with me,I will never loose hope. I'm so glad that someone told me about this web site, until now
Kept by Faith In Christ, Maria
address: ald_kah@msn.com
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 07:55 PM
My name is Amy and I am 27 years old. I was diagnosed with scleroderma when I was 13, although I showed signs alot earlier than that. I also had psoriasis at the onset of the illness covering almost my entire body. I am currently in a remission state where the disease is not progressing as of right now. Although that may be the case after having the illness for 14 years now even though at 27 I am fatigued most of the time. When I was younger before I got sick I loved to play sports, mostly softball. I played softball until the last day that I could not walk. I mean that literally. I loved it so much that I was willing to give it all I had until I couldn't do it anymore and they carried me off the field my last game, with bursitis in both hips. I knew that day was going to be the last time I stepped on the field, and it was. I also knew at that time that my path of life was about to change. Going through highschool with a chronic illness is a very difficult thing to accomplish, but lets face it being a teenager and going to high school is enough in itself. It was hard , very hard in fact because not much was known about scleroderma so without the education I didn't have too many people who actually understood what it felt like and what it was like to be me. Just as I was getting ready to enter "the most exciting years of my life", not only did my path of life change but my appearance did as well. I noticed that people started to stare at me all the time and then they began to pick on me because my skin got tight and I had "dots" all over my face. The cool thing about it is that I got to wear makeup alot earlier than alot of my friends did. I always make sure in life and with dealing with my illness that I always make sure I maintain a safe distance from denial but always maintain some sort of humor. After high school I went to school to be a Medical Assistant. It was alot easier there for sure. I was around medicine, and people knew what scleroderma was and I actually started to feel like I made the right choice.
address: presly09@aol.com
type: localized (Morphea/linear)
Date: 04/08/02
Time: 07:52 PM
hi my name is crystal now i'm 25 but i was diagnosed with morphea in my right leg at age 12 in 6th grade. no-one in my pe class wanted to be near me, i also was adopted and my sister the same age as me would not let in her own bedroom when she did she yelled don't let your leg touch the floor. most people ask me if i was in a fire, the scar is so big and kinda of looks like leather, it is right on my knee and often hurts when i walk,i try not to wear skirts but i am now less worried about what other people think i have a wonderful husband and child who think i am beautiful. it tooks the doc 2 years to figure out what was growing on my leg they did a biopsy that never closed properly either so now in the middle of my scar is alo a whole, i think that freaks people out worse than the scar. but screw them if they want to be vain. god is the strength of my life and the healer of my soul. all praise and glory to him for my mental stability throughout the harsh youthful terrorism.
address: movingwater@hotmail.com
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 07:51 PM
"All that is required is to endure the unendurable, do without the indispensible, and bear the unbearable."
I first noticed that my eyebrows were falling out. Next I had to stop doing arm curls during my daily workout. Driving through Florida on vacation, y hand s cramped and I couldn't make a fist with them. Finally the fatigue got so bad, I could barely make the hikes during my annual trek through the slot canyons of the Colorado Plateau.
When I came back I finally went to see my internist. I had mono! I spent all of August of 2000 asleep. Not satisfied that mono explained all my symptoms, especially the weight loss 40 lbs., the muscle atrophy, gauntness, and gum recession. I insisted on more tests.
As this was going on my wife and I had been having sex less and less frequently. I finally talked her into seeing a her doctor. "My doctor told me that its perfectly normal to lose interest in sex. Ihave no desire for you leave me alone."
Finally, I got to a Periodontist (Dentist) who diagnosed SSC and sent me to a Rhemuy.
Am now coping with lung and GI involvement;global fatigue, muscle loss weakness and cramping; dry mouth and eyes; alopecia; etc.
Still, I think the hardest part may be the loss of intimacy.
address: sdell@deepnet.com
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 07:48 PM
Hi everyone!!! I will inroduce myself. My nickname is Gidgit, so for purposes here, I will use my nickname. I am 53 years old, married, and we have a 9 year old girl named Cora. I was diagnosed with Raynauds in 1990. My hands were constantly turning blue. Then my feet started up with the same symptoms. It was not until 4 years later in 1994 that the underlying cause was scleroderma. At that time it was the CREST. I have had a flare up in the year 2000, the new millinium,oh boyyyyy!!!! That is when they discovered that I had pulmonary fibrosis, pulmanary hypertension, interstial lung disease, and copd. It is attacking my lungs and heart. I really feel alone in this. People, friends, family, say to me Slara...what?? I've never heard of it. I guess if they have never heard of it, it doesn't exist. Of course you look o.k. most of the time, but inwardly you feel awful. Because you look o.k., people have a tendency not believe that you are not. Because your not walking with a cane or the use of a wheel chair means your ok. Please contact me if you feel the same or even have a different opinion of this. I would love to hear from somebody!!! Thanks for letting me vent. My e-mail is sdell@deepnet.com. Waiting to hear from you. Health & Love to all, Gidgit
address: frisky4744@hotmail.com
type: localized (Morphea/linear)
Date: 04/08/02
Time: 07:41 PM
Why can't I just look normal? My name is Christy and I was diagnosised with morphea when I was 16 years old. When I first realized that there was somthing wrong with my skin I was 7. I feel so wierd when I wear a bathing suit or tank tops. The morphea is all over my back. I sometimes cry at night asking why? Why did this happen? I hate the summer time because I feel so ugly. And now that I'm 17 years old, I love to hang out with my friends and yet I feel like the odd one. Mostly all of my friends see past it because they have known for a while that I have this disorder. I quess thats the only good part. I have friends that don't care about what I look like. But the sad part is, no one knows how I really feel. Sometimes I can get out of bed because my back is so stiff. I guess I just need someone who knows what I am going through. I need someone who can help me cope with my illness.
address: jenn363@hotmail.com
type: localized (Morphea/linear)
Date: 04/08/02
Time: 07:25 PM
Here is my hopefully encouraging story to worried parents or sufferers....
When I was 5 my mum noticed that my right arm was skinnier than my left arm and was also discoloured and 'scaly'. After numerous visits to various doctors and specialists I was diagnosed with linear scleroderma. My doctor advised me to make sure I kept my arm as strong and active as possible (so I took up various sports including tennis and gymnastics) and also to rub ointment on it so soften the skin. The disease spread down to 2 of my fingers (which now look a little shrivelled) and up to my upperarm but has not progressed any further in the last 15 years. I am now 24 and so far have had no other symptoms apart from very occasional cramping and limited movement in my fingers when it is very cold (.... and people sometimes questioning me about my wierd fingers and bruised looking arm!)
When I read other peoples' stories I was overwhelmed by their severe suffering from this disease which I rarely even think about. While I don't want to give others false hope, I thought it may be encouraging for people to hear about my less serious case which has so far had only very minimal impacts on my life both physically and mentally. Think positive!!!
My deepest sympathies and best wishes go to others who do suffer daily as a result of this diseases.
address: Amybyrd@aol.com
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 04:44 AM
HI! I am a newer story on this website. I am Amy, listed with the new-bees on top. I have created a chat room on AOL. Please come join us there. It's so easy! Go to www.aol.com, then select the CHAT from the headers. Given the selections for the rooms choose LIFE. Then simply scroll until you seee SCLERODERMA chat. For empathy, sympathy, support, ideas, help, friends, or just some one who knows... Talk with us, we are waiting!!
address: Aamybyrd@aol.com
type: systemic (diffuse or CREST)
Date: 04/08/02
Time: 04:38 AM
I have created a chat room on AOL. To participate go to www.aol.com -select the LIFE catagory in Chat -SCLERODERMA chat is the name, and I hope to see many of your there! Please, let's talk amongst ourselves and meet one and other, it can only make good come of it. New friends, new pen pals, sympathy, empathy and cheers to go on... Now who doesn't need some support now and again? Please join me at www.aol.com Chat- Life catagory- SCLERODERMA chat Thanks and see you there!!! Amy E S Brown p.s. I am one of the new "stories" on the top of the website, so I'm no stranger. Meet me here and listen to my story, then we can talk at the Chatsite!
address: grstephan@earthlink.net
type: systemic (diffuse or CREST)
Date: 04/06/02
Time: 12:01 AM
Help! After being diagnosed with scleroderma two weeks ago I still feel so confused and in the dark. Anyway, my immediate request is for any information on how to approach SSA for MediCal, food stamps, and disability. Signed: A. J. facing 40 and permanently disabled.
address: jen_garydimmick@msn.com
type: systemic (diffuse or CREST)
Date: 04/05/02
Time: 06:56 PM
this is just an email adjustment... sorry for taking up the space
address: jengarydimmick@msn.com
type: localized (Morphea/linear)
Date: 04/05/02
Time: 06:50 PM
I've had scleroderma for four years. As of now they have diagnosed it as localize, but it is leading toward crest. I have positive ANA up to 1.10240, positive rheumatoid factor, and recently have Raynaud's phenoenon on both feet. I would like to know if there is any other patient with localized scleroderma who has these symptoms.
address: Lo2431@aol.com
type: localized (Morphea/linear)
Date: 04/05/02
Time: 12:36 AM
I'm a 22-year-old female, and I was diagnosed with Morphea when I was about 4. Years ago doctors concluded that whatever was causing it was out of my system, but I'm very self-conscious about the pigmentations still left on my body- especially the ones on my arms, legs and back. Most of the dermatologists I went to said there isn't much I can do, and I've just started using Dovonex (vitamin D3). I'm wondering if anyone knows any treatments that are possibly effective in eliminating or even reducing the skin pigmentation? It is something I'm very conscious of and I often get depressed about. If anyone has any information on treatments, please contact me.
address: lancey@bigpond.com.au
type: systemic (diffuse or CREST)
Date: 04/03/02
Time: 09:28 PM
Hi my name is Michelle,I am from PERTH Australia.I have had Raynauds since 92 and I was diagnosed with CREST last year.I am very grateful to this web site,as i was given very little information from my docter and my specialist.I would love to hear from anyone with remidies,information or just someone who would like to just talk.This is a very lonley disease and most people have not heard of it,(including docters). Thanks for sharing. Michelle.
address: moputa@aol
type: localized (Morphea/linear)
Date: 04/03/02
Time: 11:40 AM
Hi My name is Marie, I live in Kent in England, and I have \Morphoea, is started just about christmas time, with my back feeling tight,It has moved very fast, and now the skin on my back, behing my knees, my arm inside my elbows,it is very tight and painful. I cannot go to the gym ot enjoy yoga, as it is so tight, it feels like it will split. I am having steriod tablets, and havr just started PUVA treatment twice a week. I would love to hear from anybody who has something similar. Good luck and God Bless Marie
address: dnelson@invent.org
type: localized (Morphea/linear)
Date: 04/01/02
Time: 03:56 PM
My father (Howard) has been living with this disease since I was three and I'm 25 now. He has had over 13 different surgeries and his latest included the amputation of his right leg. He is very strong willed person and there has never been a time where he has felt like giving up. This disease is a very slow process and it would start on one side of his body then maybe year or two later is would start on the other side. He can walk with crutches and gets around pretty good and he can also write with whats left of all ten fingers. I say to you people out there with this don't give up, I think what keeps my father alive today is hope,faith and prayer. I wish they could find a cure for this and maybe someday they will but until then just keep praying I know that may sound hard but for my father being sick for 22 years prayer is working.
Desarae
address: rachael.stent@btinz.com
type: systemic (diffuse or CREST)
Date: 03/31/02
Time: 05:59 PM
Hi, I am Rachael from New Zealand, I have had this condition for the past 10years - diagnoised when I was 14 after many different tests, and finally a skin biopsy. I am currently on methotrexate and just starting on the folic acid - so I don't feel so sick every day. I don't know much about the disease - but know that it is in my lungs - thanks to a lung scan. I have only just found this website after finally founding out how to spell this condition - terrible I know. I would be really interested to talk to people who know what I am going through and know what it is like to deal with this everyday - not a lot of people understand. Thanks for reading my story,
Rachael
address: gibsonflo@aol.com
type: systemic (diffuse or CREST)
Date: 03/29/02
Time: 02:21 AM
HEY THERE IT IS KIM AGAIN.IT WAS GREAT TO HEAR FROM EVERYONE THAT WROTE TO ME FROM THE WEBSITE..I NEVER REALLY KNEW HOW MANY PEOPLE ARE LIVING THEIR LIVES EVERY DAY LIKE I AM..IT IS REALLY GOOD TO KNOW THAT PEOPLE ARE THERE...I AM LOOKING TO START A SUPPORT GROUP IN KENTUCKY AND WOULD LOVE TO FIND OTHERS THAT LIVE AROUND WHERE I DO..I LIVE AROUND THE LEXINGTON AREA AND HAVE MET HARDLY NOONE IN PERSON WITH THE DISEASE.IT WOULD BE GREAT TO SHARE OUR...[HAND STORIES] AND THE INTERNAL PROBLEMS WE FACE DAILY..NOT TO MENTION THE BUTTONING AND PICKING UP OF SMALL OBJECTS...JUST E-MAIL ME ANYTIME,,I LOVE TO MEET NEW PEOPLE..THANKS A LOT !TAKE CARE AND BE STRONG...
YOUR SCLERODERMA BUDDY, KIM:0)
address: faithnhope60623@yahoo.com
type: systemic (diffuse or CREST)
Date: 03/21/02
Time: 10:00 PM
Hi, My name is Maria I'm 35, I was diagnosed with scleroderma in 1996.I'm really glad to have found this site.I read some of the letters and I know how you feel,my prayers are with you.
address: feyzikaan@hotmail.com
type: systemic (diffuse or CREST)
Date: 03/21/02
Time: 11:21 AM
merhaba türkçe bilen scleroderma hastaları ile konuşmak isterim.bende scleroderma hastasıyım.
address: drea2901@yahoo.com
type: systemic (diffuse or CREST)
Date: 03/20/02
Time: 07:35 PM
Hi, I am Andrea and I live in Jamaica. I was diagnosed in May 2002 (SD and Raynaurd's Phenomenon). My memory (lol), skin and joints are terribly affected. I think I am the only person I know of with this chronic memory loss problem. (lol)
I am truly grateful to know that you are all so very supportive of persons like us. Keep focused on the positive things in life and do not give up hope.
address: zora-precious@Hotmail.com
type: systemic (diffuse or CREST)
Date: 03/20/02
Time: 01:04 AM
Hi, I consider it a blessing to communicate with those who can identify with this his disease. I am a Black female, 48 and newly diagnosed. Currently I am enrolled in a UV clinic. This light treatment is suppose to aide in the progression, swelling and tightness that I am experiencing. My face, neck, chest and back area iis discolored. I am blotchy. Looks like I've been burned. I'm looking for a good cover-up/make-up. Any and all suggestions welcomed. Thanks
address: katherinegenelin@hotmail.com
type: systemic (diffuse or CREST)
Date: 03/17/02
Time: 12:09 PM
Thank you for your request to talk with other people with scleroderma. Last summer a physician told me that I have this type of disease. She did not send me through any additional testing so I have no idea as to what type I have. I suspect it is time to revisit my doctor for further testing. I sure could use someone to talk to about this disease. I am from Minnesota and would appreciate information on any groups here in the Twin Cities. Look forward to hearing from you.
Warmly, Kay Genelin
address: schotzer@earthlink.net
type: systemic (diffuse or CREST)
Date: 03/16/02
Time: 06:53 PM
Hi my name is Marji and I was diagnosed with Scleroderma about ten years ago the systemic type. I have never met anyone with this disease and have felt all alone and very odd. What I am trying to do is set up a support group for people who have the disease or people who live with someone who has it. I live in the Larimer County area so if you are interested please email me. Also if you would like to talk about helping out also email me. I hope to get more information on where and when in a month or so. I appreciate your response. Hope to hear from you soon. Marji
address: Dragonsfreedom@hotmail.com
type: systemic (diffuse or CREST)
Date: 03/15/02
Time: 02:06 AM
I don't know what type I have. I am looking for information I have has this since I was 10, I am now almost 18. I don't know what can happen, just reading a few of your stories opens my eyes. I am so sick of being in the dark. Please feel free to give me information, and talk to me about it. I do know some things of course, but please, anything will be of help! Dara
address: michelledixon@my.tupperware.com
type: systemic (diffuse or CREST)
Date: 03/13/02
Time: 08:14 PM
Hi my name is Michelle Dixon and my mom has Diffuse Scleroderma, Fibromyalgia and Raynauds Phenomenon. She has had the disease for 13 years now. It has effected her skin,esophagus,kidneys, liver,lungs,digestive system and bowls. She also had three fingers amputated. It has been such a struggle for her and all of ous. She has been in remission for the past year up until now, we just found out yesterday that they want to put a Gastrostomy tube in her. Is there anyone out there that has the G-tube and can give me a little bit more information about this?
Thanks so much for listening. Michelle
address: travelkp@aol.com
type: localized (Morphea/linear)
Date: 03/12/02
Time: 07:50 PM
I developed morphea four years ago....its gone now leaving only the hyperpigmentation where it once was. I am now considering breast implants and wondered if anyone has gotten them and if it had any effect or recurrance of the morphea.
address: Mudge813@aol.com
type: localized (Morphea/linear)
Date: 03/06/02
Time: 01:17 AM
Hi everyone, My name is Kellee and I have Morphea and linear scleroderma on my right leg. I am 13 years old and has had it since I was about 4 years old. I recently had surgery on my left leg to shorten it. It was a pain-free operation. If anyone wants to talk about it, please feel free to email me! I would love to help!
Kellee
address: tlopez@nrao.edu
type: systemic (diffuse or CREST)
Date: 03/04/02
Time: 03:02 PM
HELP!! My mother has had Scleroderma for many years. In the last couple of years she has developed several severe mouth blister which are very painful and take months to heal. (When one does heal, another sore appears). She has lost over 30 lbs., and is loosing interest in life. After numerous Dr. visits and two biopsies we are unable to find a cure or relief. Any suggestions - please contact me. Thanks!!
address: Bconder@yahoo.com
type: systemic (diffuse or CREST)
Date: 03/03/02
Time: 11:44 AM
-I am writing for my 74 y/o mother who has had scleroderma (systemic) for 30 years. She currently has a cataract in her right eye. The opthalmologist is unsure abt the surgery on a person with such advanced scleroderma. Have any on you experienced this? Could you refer me to any literature or resources on this? Thanks in advance, Bob
address: aries46201@yahoo.com
type: localized (Morphea/linear)
Date: 03/02/02
Time: 02:03 AM
hi ya all, i posted a long time ago and wanted to give ya a lil bitty update!! I finally met someone that has this disease besides myself. My step cousin was diagnosed with systemic scleroderma recently. She went to her doctor awhile back and she had a test done on her liver cant remember why she had the test done. But he told her this was the problem and she was in phase one. He has her on agressive steriods and her liver is doing very well. She went to his office the other day and read a pamphlet and discovered that what i had was related. **i had told her this several times lol** now shes so excited to finally have someone that understands her fears and can honestly say i know where ya comin from. I have morphea but its just a branch of this disease we all have. Just thought it was amazing that someone that i have grown up with my entire life is diagnosed with the same type of disease that i have within the same year of each other!!! i wish she didnt have the disease but im glad i have someone i can talk to in person now, keep your chin up folks. Smile it increases your face value :o)~~izzy
address: haverstock@devtex.net
type: systemic (diffuse or CREST)
Date: 02/26/02
Time: 10:02 PM
I just found out that my best friend has scleroderma and I am not sure what type she has. I can only tell you that everyonce in a while she has swelling in her hands and around her eyes. She hates the way that it makes her look. I keep telling her that she is just as pretty with the swelling as she is without the swelling. She gets very depressed when this happens to her and I am not sure how to help her. My husband and I have tried many times to help her but we do not know much about this. If anyone can recommed a good web site for us to get more information please email me. Thanks alot. Also I am here if you need someone to talk to. I will try to understand what you are go through. Thanks Karen
address: pat972@webtv.net
type: systemic (diffuse or CREST)
Date: 02/23/02
Time: 05:01 PM
Iam a 63 year old female with crest scleroderma. I lost my right leg two years ago after falling in my back yard and breaking my leg and my leg never healing. I am presently taking priolsec for acid reflux and nausea and also synthroid. I have a lot of fatigue and try to take care of myself. Would love to hear from anyone with similar problems.
address: cdmcdon@hotmail.com
type: systemic (diffuse or CREST)
Date: 02/21/02
Time: 11:38 PM
Hi, I'm not sure how this happens to anyone.I'm not even sure what I've really got yetAlmost 6 years ago I was told it was Mixed Connective Tissue Disease my main trouble was my raynauds Ihad been told in the hospital it was Lupus, the Scleroderma My family and I did alot of reading. Then the trip to the doctor after a lot of test He said (mctd) now I had 5 miscarriages before haveing my daughter 3 months early. Now I'm Married again and wanted to have my tublel reveresed and after seeing mu OB and a MD I fixing to star seeing a Doc. for those Aches and pains in your joints that I don't have yet I have a few of the signs like a rash on my face that looks like a butterfly I have spots of what I call dry skin and I'm always tired I wasn't really worried until My OB after getting my pap back wanted to do a biop. He said the word Scleroderma and I know my (MCTD) had found a new name . I just want to know when dose the awfull feeling that you want see your child grow up or have a long full active life with your new husband go away and how do you help your family ajust to the ups and downs and unknown? I'm sorry I was long winded but I very scared I was with out trouble other than the blue hands and discofort of winter for the last 6 1/2 yr I worried that is fixin to change. Thanks for reading listening and careing.I'm for the Plano Texas area if their is anyone close. Thank you Christy
address: snowwoman16@msn.com
type: systemic (diffuse or CREST)
Date: 02/20/02
Time: 06:14 PM
Hi, I have had systemic sclerosis with pulmonary hypertension and raynauds since 1999. I am told not many people have it externally and internally but I guess I just got lucky. I would love to talk to anyone with any of these. I live in Kansas and don't know of any groups but would love to hear if there are any out there.
address: evanderwende@socal.rr.com
type: systemic (diffuse or CREST)
Date: 02/19/02
Time: 05:05 PM
Hi, I was diagnosed 10 years ago and had all the usual things. Swelling,raynauds muscle atrophy etc. In the last couple of years I have had a G-tube put into my stomach for eating and am now dealing with my lungs. It has been suggested that I begin with interferon gamma injections for the pulmonary fibrosis. Has anyone out there tried this? Would like to hear from you . Thanks
address: Esntgra@aol.com
type: systemic (diffuse or CREST)
Date: 02/14/02
Time: 12:38 PM
Hi everyone, my name is Elena and i was diagnosed with scleroderma 10years ago, it has been the longest most painful time in my life, but through all the hardship God has given me a child, she is now 10 years old.If anyone needs to chat e-mail me anytime. I know what its like to feel alone and different from everyone else.
address: GroovinGma.@aol.com
type: systemic (diffuse or CREST)
Date: 02/12/02
Time: 09:36 PM
Hi, I was disgnosed with CREST in 1995 when I went in for Carpel Tunnel surgery. Since then one thing after another shows up. I have fluid on my heart and lungs ( on oxygen 24/7) my esophagus acts up a lot of the time, swelling on fingers and toes.I could go on an on but that is enough for now. Worked for the Federal Government for 20 years in the supply office and was really looking forward to retiring. When I did retire my husband still had a few years left to work, so I would travel with my mother and friends. It never come about, we don't travel very much, its a lot of trouble having to take 15 to 20 tanks of oxy. plus my consentrator along. Beside now I don't have that energy anymore. I would love to hear from somebody that has some of these problems. LaVon
address: lrichard26@qwest.net
type: systemic (diffuse or CREST)
Date: 02/11/02
Time: 05:27 PM
I have had systemic scleroderma for over five years, the hands have been the worst and now my nails are going. I would love to see another person and be able to talk to them. I live in Pueblo, Colorado and if there is someone there please get in touch with me. Gen
address: amybyrd@aol.com
type: systemic (diffuse or CREST)
Date: 02/10/02
Time: 11:56 PM
Hello Fellow Survivors! I am Amy Sweeney Brown. I live in Indiana. I have Systemic Scleraderma affecting my hands,andskin lungs. I also have Raynaud's Syndrome, Sjogren's, Lupus, and Rhuematoid Arthritis. I am looking for Persons, male and female both to start a support group in the area in which I live. The people I have met on this site have changed my life and outlook in a most positive way- yet, in the condition my hands can get into, I am unable to type and "talk". I'd like to gather with those who can get out and be mobile and start a support system for ourselves. Please contact me if you are with in a reasonable distance. I am in south central Indiana and am willing to drive a ways to meet up with many... Keep smiles and happy thoughts. Be well and healthy and positive!
Thanks Amy
address: SpooleyMooley@aol.com
type: systemic (diffuse or CREST)
Date: 02/08/02
Time: 07:54 PM
I just discovered this website and am pleased that I did. I am a 38 year old female that lives in Michigan and have had raynauds since I was about 16 and have had scleroderma for the past 7 years. I suffer along with the rest of you . . . I do not feel so alone anymore after reading all of your post its. I would like to hear from any of you that suffer from esophagus problems. I recently ended up in the hospital with what I think was a spasm of the esophagus that would not respond to my nitroglycerin treatment. Had to have some VERY strong pain medication to help. Anyways, if any of you out there have had something similar write to me with any info you may have. Thanks for reading my little contribution. Molly
address: l_dungan@hotmail.com
type: systemic (diffuse or CREST)
Date: 02/07/02
Time: 08:36 AM
My mother-in-law (Hertha) has Scleraderma. Diagnosed 10 yrs ago with Lupus then Scleraderma. She has suffered sever joint pain in hands, knees, and hips. Scleraderma has affected her bowels, intestinal tract, esophagus, thyroid, and we fear now lungs. The past year has been a real burden on our family. She has been in and out of the hospital for dehydration due to her bouts of diarrhea and not being able to keep any food down. The doctors (several, I might add) have had her on so many different medications trying to find something to give her some relief. I have tried to find information on Scleraderma since she was diagnosed, but with little results. I bought this computer with the hopes of finding more information on this crazy disease. I was so thankful to find this site and have already learned more than I knew just a few hours ago. We have been unable to find any kind of support group in our area of Texas. My biggest shock so far is to learn that this disease is affecting so many age groups. I, a daughter-in-law, who feels so helpless in the care of her mother-in-law , am blessed to know I can now find support and knowledge from those who walk in her (my mother-in-laws) shoes. God Bless You all! Linette
address: aktaterbaby@msn.com
type: systemic (diffuse or CREST)
Date: 02/07/02
Time: 08:35 AM
Hi! I'm Anita. I live in Tennessee. I have Scleroderma and secondary fibromyalgia. I am 48, I have 2 daughters and 2 grandchildren. I love to read, do crafts, and my new fun is this computer. I was diagnosed about 1997. I have significant joint and muscle problems but my enemy seems to be respiratory. I am a strong-willed, honery woman and I love to laugh. Feel free to E-mail me. God Bless You.
address: GIBSONFLO@AOL.COM
type: systemic (diffuse or CREST)
Date: 02/05/02
Time: 10:34 PM
I HAVE WENT THROUGH MY FIRST CYTOXAN RADIATION TREATMENT AND HAVE DONE QUIET WELL-I HAVE MET SO MANY PEOPLE SINCE PUTTING MY STORY ON THE WEBSITE.I AM VERY EXCITED.DOES ANYONE ELSE OR HAS ANYONE ELSE EVER HAD A RED RASH ON FACE AND ARMS FROM SCLERODERMA IF SO I WOULD LOVE TO HEAR FROM YOU..THANKS ..KIM:0)
address: anfanger@xtratyme.com
type: systemic (diffuse or CREST)
Date: 02/05/02
Time: 04:21 PM
Just read many of the Post Its and feel very Blessed,thus far. I am a 58 year old female who was diagnosed in 1996 with PSS after many missed diagnoses. The painful extremties and Raynaud's ( living in Mn is a challenge) seem to cause the most problems just now but I have found that having weekly, total body, massages is a great benefit to me. I continue to work P.T. in a medical clinic and have a wonderful supportive family. In this age of discoveries, we MUST NOT GIVE UP the hope that something will be found to help us. Keeping a PMA ( posivitve mental attitude ) is as important as continuing to trust in God. I would like hearing from anyone--it does help to know there are others like me around and I am not alone.
address: kittikat2353@aol.com
type: systemic (diffuse or CREST)
Date: 02/01/02
Time: 10:34 PM
I just found out what I had after 4 yrs. of tests. My peripheral. nervous system and lungs have already but affected. I live in Linden Va.
address: adeleeb@aol.com
type: systemic (diffuse or CREST)
Date: 02/01/02
Time: 07:04 AM
I live in College Point, Queens (New York). My sister has scleroderma. Imagine my delighted surprised when I saw your bumper sticker in a Waldbaum's parking lot. As a result I became aware of this wonderful web site. Who says it doesn't pay to advertise? Many tahnks. Shell
address: eurowood@acr.net.au
type: systemic (diffuse or CREST)
Date: 02/01/02
Time: 12:41 AM
hi, just searching for a friend who has scleroderma.... for a diet to help this disease...if anyone has any idea's please contact us. thank you
address: lpopo7@aol.com
type: systemic (diffuse or CREST)
Date: 01/28/02
Time: 11:03 PM
I was diagnosed with Raynauds/Scleroderma (Crest)around the age of 20, I am now 42. It has changed my life completely. Always contending with ulcerated fingers - any one have any remedies? Last March had one of my fingers partially amputated thinking this would help - finally after 5 month it finally healed but that ended up being a very very painful 5 months. I am looking for support and any remedies one has to help with these painful ulcers, now starting to get them on my ears, and elbows. Need help!!
Would love to hear from you.
Leslie (lpopo7@aol.com)
address: Kirstenfatz@aol.com
type: systemic (diffuse or CREST)
Date: 01/27/02
Time: 05:00 PM
Hi , I'm Kirsten. I was diagnosed with Scleroderma 3 weeks ago and see the Specialist this week. Thing is I feel a fraud I have read all your 'post its' and you all have good reason to write, I on the other hand only am suffering from Raynauds, a small amount of joint pain and sporadic muscle fatigue & tiredness. I seem to have had all these as long as I can remember. So except for the insecurities of not knowing what's next, I keep thinking that this really isn't true and I've been wrongly diagnosed. Anyone else out there feeling similar or with any advice?
address: surgro@sentco.net
type: systemic (diffuse or CREST)
Date: 01/23/02
Time: 03:30 PM
Hi My name is Kim. My mom has scleroderma. So far it has affected her lungs. She use to use oxygen only when she was up walking. Now she is suppose to use it 24/7. My mom is the type of person that does not use it unless she has to. She says that she does not want to get depended on it. But the doctor now wants her to use her oxygen at night. She can not go up steps without stoping every 2 steps. She gets out of breath really fast. Even when she showers she has to use it because she gets out of breath. I was wondering if anyone has heard of these people getting lung transplants? I am afraid that at the rate she is going now that her lungs will not last to many more years. Her coughing is REALLY bad. Nothing seems to help that. Please let me know of any suggestions. Thank you.
address: derek.reid@bbc.co.uk
type: localized (Morphea/linear)
Date: 01/23/02
Time: 09:53 AM
At last I have found somewhere, where hopefully, I can find out some more information on this disease. I was diagnosed a little over 18 months ago. I had these skin patches for a while which suddenly began spreading and getting larger. I went to my GP, who referred me to a skin specialist, I then found out what was wrong. Now my fingers have become extremely swollen furthermore, I am awakened every night with severe attacks of pins and needles in my arms and hands and attacks of nummbness. It is extremely hard to try and find out some information about this, and to try and get my doctor to refer me to see a specialist. Any advice on seeing somebody in the London area who can give me some help please?
address: Harris@kingcon.com
type: systemic (diffuse or CREST)
Date: 01/23/02
Time: 09:19 AM
I am so happy to have stumbled upon this web site! I was diagnosed with scleroderma in June of last year.Each day brings forth new and varied symptoms of this disease. I have felt lonely and at times invisible. My life was very active before this. I am having a difficult time readjusting to my new lifestyle. Thank you all for offering you strength and hope! DRH
address:
type: systemic (diffuse or CREST)
Date: 01/21/02
Time: 01:55 AM
address: gibsonflo@aol.com
type: systemic (diffuse or CREST)
Date: 01/21/02
Time: 01:55 AM
hi there my name is kim and i am 26 yrs. old from kentucky.it really helps to read all of these stories about how other people go through a lot of the same things that i do.i have been diagnosed for 3 yrs. now-i have 2 small children and i am on cytoxan radiation treatments now for my lungs.[this helps so the disease does not progress.]it has not helped so far-but..it is still new to me.i would love to hear from anyone. it is great to have people who know what you mean when you tell them you have ....[scleroderma].have a great one.kim:0)
address: JOJOB80@YAHOO.COM
type: systemic (diffuse or CREST)
Date: 01/19/02
Time: 03:19 PM
Hello everyone, I have Scleroderma and was diagnosed about 4 1/2 years ago at the age of 16. I am now 21 going on 22, I have been through alot throughout my whole life. I have suffered pain and endured pain. Not once have I let the pain and suffering take a hold of my thoughts on life, for I do something that makes all the bad turn to good. I thank God for all in life he has blessed me with. He has blessed me with everyday I wake up, the vessel (my body) He has chosen for me, the things I am able to do and accomplish each day, a loving family, a beautiful daughter (3yrs old)that looks just like me, wonderful friends, and the will to make the best of what I have been blessed with. When I think of my disability I do not think of death, even though I came very close to it. I think of life, and how beautiful it is when you have God and our Lord Jesus Christ as your guide. He has given me strength to keep my body moving, and He has given me LOVE to keep my spirit in peace. God bless you all and may He show you the joy of life like He has done for me.
address: eliasdoi
type: localized (Morphea/linear)
Date: 01/16/02
Time: 10:18 PM
My name is Elizabeth. I am 21 and have had both morphea and linear scleroderma since I was 10. My morphea patch is on my right abdomen. My linear scleroderma runs all down my right side-from forearm, to back to leg, and back on top of my foot. Also, I have noticed an intolerance to cold lately. I believe I also have Raynaud's, but haven't seen a doctor in 2 years. My patches have gone through periods of relative stability and softening, but then they spread again and reharden. Is this cycle going to continue? My patches appear as though they are still growing. Is this normal? I'd like to know for my piece of mind. Doctors aren't too good at answering these real questions. I've seen both dermatologists and rhumatologists. Which field is really the best to see? All the doctors I've seen seem to be the same and seem to not take this disease seriously. Does anyone else have other immune system problems in their families? My sister has lupus, my mother has fibromyalgia, my maternal grandmother has arthritis, my fraternal grandfather had acquired hemophilia, and multiple people from both sides of the family have had cancer. Is this common on other families?
Also, I know it's had to find support for morphea and linear scleroderma. If anyone needs support, wants some information, or just wants a sympathetic ear, please feel free to write me.
address: rbtwmn11@stis.net
type: localized (Morphea/linear)
Date: 01/16/02
Time: 09:47 PM
My 6 year old daughter has linear morphea on the entire right side of her body as well as her face. We have been treating her for about a year with methotreaxate and steroids. It does seem to have greatly slowed if not halted the disease. However the damage is done. I am looking for anybody who has a similar diagnosis and is further along the progression. We have been told Kelly is going to need plastic surgery to fix her face as she grows up. No one can say how much damage will be done to her face of body. Any informaiton would be a help. Thanks a lot. Robert Williamson
address: www.dutto_biggun@hotmail.com
type: systemic (diffuse or CREST)
Date: 01/14/02
Time: 09:26 AM
G'day fellow sufferers,I was diagnosed 2 years ago after I noticed it was getting harder to make a fist and my fingers were very stiff with very slow movements and as I surf a lot my hands were getting cold instantly and turning an odd colour(in summer),I also noticed a distinct drop in my energy level and was allways wanting to crash out,and I had fingertip ulcers which would not heal and really started to affect my job as a gardener.I tried a couple of antibbiotic treatment,but as a mystery disease I was a bit suss on popping pills all the time for no results,so I decided to see a naturopath,no joy there,so I decided to see a chinese herballist(who later told me that I looked like a porcelain doll)and my finger ulcers healed immediately,my fingers are back to about 80%,my skin is starting to soften,and my blood circulation has improved out of sight.If anybody is at wits end as I was I would recommend to anybody to give this treatment a go,it involves drinking chinese herbal tea,acupuncture and qi-gong therapy.All the best to everybody and lets beat this disease!!!!!!Paul
address: aries46201@yahoo.com
type: localized (Morphea/linear)
Date: 01/13/02
Time: 08:47 AM
my name is Izora and I live in phoenix. I have had morphea for about a year now. I noticed a scar on my back in december of 2000 and I noticed i had a few bruises on my arms that werent going away. I scheduled an appt with my doctor and he told me that he had no clue what it was and for me to go to a derm. So i went there and did two biopsys. One on my arm and one on my back. The results were morphea. He has referred me to another doctor but i havent yet made it to the appt. Why is a long story and i wont bore you with the details. I have read so much about this disease now. This makes it easier on me being that I know there are other people out there that are like me and have that same feeling like they are alone. My doctor couldnt tell me much about morphea except the fact there isnt much known about it. He did put me on atarax for the itching but other than that he said that if the steriods couldnt do anything he had no idea how to approach this. That didnt make me feel any better. He had told me that I would die from morphea and that its an uncurable disease but that it wasnt that bad. I walked away from his office being more confused than i had been when i walked in. It wasnt his fault though, he was just as nervous as i am i believe. He isnt very old and this is his first year out of med school. I think he having to tell someone this made him just horrible nervous. But at any rate I do feel much better now knowing that im not the only one with this disease, i know that it isnt fair to think that way and im not wishing it on anyone just glad that you guys are here. I am 28 years old, have a whole zoo of anmls lol. I have three kids and one very understanding fiancee. We will be tying the knot in december. Our zoo includes 4 snakes, 3 dogs, 4 cats, 10 rats and 3 ferrets. We love animals and seem to have the word sucker stamped in our forehead!! If anyone wants to chat, or just vent or swap pet stories drop me a line at aries46201@yahoo.com I try to be prompt on email. Thanks for listening to my story. Smile it increases your face value :o)
address: aries46201@yahoo.com
type: systemic (diffuse or CREST)
Date: 01/13/02
Time: 08:47 AM
my name is Izora and I live in phoenix. I have had morphea for about a year now. I noticed a scar on my back in december of 2000 and I noticed i had a few bruises on my arms that werent going away. I scheduled an appt with my doctor and he told me that he had no clue what it was and for me to go to a derm. So i went there and did two biopsys. One on my arm and one on my back. The results were morphea. He has referred me to another doctor but i havent yet made it to the appt. Why is a long story and i wont bore you with the details. I have read so much about this disease now. This makes it easier on me being that I know there are other people out there that are like me and have that same feeling like they are alone. My doctor couldnt tell me much about morphea except the fact there isnt much known about it. He did put me on atarax for the itching but other than that he said that if the steriods couldnt do anything he had no idea how to approach this. That didnt make me feel any better. He had told me that I would die from morphea and that its an uncurable disease but that it wasnt that bad. I walked away from his office being more confused than i had been when i walked in. It wasnt his fault though, he was just as nervous as i am i believe. He isnt very old and this is his first year out of med school. I think he having to tell someone this made him just horrible nervous. But at any rate I do feel much better now knowing that im not the only one with this disease, i know that it isnt fair to think that way and im not wishing it on anyone just glad that you guys are here. I am 28 years old, have a whole zoo of anmls lol. I have three kids and one very understanding fiancee. We will be tying the knot in december. Our zoo includes 4 snakes, 3 dogs, 4 cats, 10 rats and 3 ferrets. We love animals and seem to have the word sucker stamped in our forehead!! If anyone wants to chat, or just vent or swap pet stories drop me a line at aries46201@yahoo.com I try to be prompt on email. Thanks for listening to my story. Smile it increases your face value :o)
address: valleychick05@hotmail.com
type: localized (Morphea/linear)
Date: 01/12/02
Time: 04:51 PM
I am 15 years old and I have had morphea since I was 12. It started out on my stomach and I have about 6 little lesions there. I showed my mom and she took me to see my pediatrition. He referred me to a ruematologist and a dermotologist. I saw them both and they both told me opposite things. After a while, I started getting lesions on the inside of my left arm. I now have about 6 lesions on my arm.Recently it has gotten so bad that it is attaching to the tendons in my arm and affecting the movement of my arm and hand. It is like I have arthritis in my hand. It effects my everyday activities like opening doors, opening bottles, playing and sports involving the hands, writing with a pen or pencil, and mainly gripping stuff. The doctors have put me on various medicines. The most recent ones that i can remember are relafen, vioxx, plaquenil, diclofen,and methotrexate. Currently I am taking methotrexate, folic acid, diclofen, and plaquenil. My doctor also makes me get blood and urine tests every 2-4 weeks to see if my morphea is spreading or becoming systemic. Whenever I go to my pediatrition for any reason now, they treat me as a little guinea pig, he has all the new doctors come in and look at and feel my "rare case". I know they are doing this to teach the doctors, but it makes me feel really uncomfortable.In my case I have all of my lesions on the left side of my body, I was wondering if this is the case for anyone else out there. I was also wondering if anyone has any ideas what the cause for this disease is.
Good luck to everyone. I know how you feel.
Terri St.Charles, MO valleychick05@hotmail.com
address: del63al@earthlink.net
type: systemic (diffuse or CREST)
Date: 01/10/02
Time: 10:49 AM
I am Deaf with systemic scleroderma for 12 years. I have been and am still looking for Deaf with SD ever since i have it. Deaf, are you out there to contact me so that I like to get touch with you ? PLEASE do. Thank you. For your information, I use ASL and am living in Sunnyvale, Ca Delphine
address: anniefeatherstone@remax.com.au
type: systemic (diffuse or CREST)
Date: 01/10/02
Time: 10:48 AM
Hi My name is Annie - I am from Australia.
At the moment I am fairly shell shocked having been diagnosed only 2 weeks ago and am getting married in 3 weeks.
I guess I have hit panic at this point.
It seems that this disease is very serious. I have 2 children and feel that I have a big job to do with them yet and really want to be able to take care of them.
Anyone in Toowoomba or Brisbane I would love to meet you
address: april_cady2002@yahoo.com
type: systemic (diffuse or CREST)
Date: 01/10/02
Time: 10:44 AM
Hello! I will start off by saying I've read all of your storie's and felt a bond to you all. Each person shared feeling's I've had. I've cried for you and smiled at your courage and will to fight. I was checked for this about ten year's ago. They thought maybe this was lime disease. The test came back negative. So they decided to give me a biopsy where I had hard skin on my arm.They quickly got the results that I had scleroderma. They told me I had the skin type. I was sent to the reumatoligist.They thought I had something else. Never told me what! I begain to think I was dreaming this wasen't real that I had some strange disease that know one new what was wrong. I went back to my dermatoligist for some answer's. He decided to get twenty doctors togeather to get their feedback. They all agreed that I in fact had the disease.Okay ...so do they really know what kind I have? How do you cope when the doctor's don't act like they know what's really happening??? I felt very scared! I wasent offered much explanation. So I dug some. After the biopsy the scleroderma traveled to my shoulder. Left alot of scaring. Then I started the raynunds disease in the hands,legs,finger's,toe's arm's.I've had alot of knee trouble's and joint pain ,fatigue,blister's,breathing problem's.I've often felt lost of what is really going on! I try to live like i'm okay and i really think that's the best medicine. I also have good luck with msm,flaxseed,vitamenE, adkins diet, yoga,deep breathing exercises.I could go on forever.... on my experences& questions but am sick and need to rest. I wish you courage,wellness. I send you all alot of hug's,prayer's.
April
address: amyg4425@aol.com
type: systemic (diffuse or CREST)
Date: 01/10/02
Time: 10:42 AM
Hello, My name is Amy and I was diagnosed with scleroderma one year ago. I have had Raynould's for about 18 months before I went to the doctor because I was getting ulcers on my figertips that would not go away. I still don't know what to think. I quit nursing school because I don't think I can finish. It is so depressing to not be able to do certain things like button your pants, or unscrew a pop bottle. I just want someone to talk to who has what I have to see how they feel, through clinics and numerous doctor's offices I have never met anyone who have the same thing as me. I am 19 years old.
address: RCarr@aol.com
type: systemic (diffuse or CREST)
Date: 01/10/02
Time: 10:41 AM
Hi I'm Robin. I am the proud mother of two great kids, a three year old boy and a thirteen year old daughter. Trust me, never wait ten years between kids...not fun...I really found out how old I had gotten between the two. I hope you all don't mind that I am writing because I have not been diagnoised with scleroderma. However, after all the research I have done I feel more certain everyday that goes by, that I do have it. I h