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- Eve, 43
- I have been fighting for so long trying to understand what has
been going on -- now I'm just scared.
-
chartley4648 - I would like to hear about women that have had
children with scleroderma.
-
shelleyb66, 40 - Finally I feel like my life is turning
around a little.
-
Sharsheen - I left the doctor's office that night believing I
was about to die!
- Kim,
44
-
I battle flare-ups on what
is almost a monthly basis and can almost predict the weather by the
way my body feels.
-
Kim Stuurman
-
 My own doctor was telling me over
and over again it was because of my puberty.Dutch and English
- Joanne -
At this time I was so
sick I couldn’t even open my mouth to eat...
- Michelle - The disease spread so
quick throughout my body.
- Barbara
- I had no idea what it was but relieved to have a name for
whatever was going on.
- Anonymous
- No one knows how I really feel but another person with
scleroderma
-
Karen - This has been a long
journey but for all the bad parts a lot of good has come out of it.
-
Charlene - My husband is my
hero, he loves me and takes good care of me.
-
Marina - She not only diagnoses my
physical symptoms but she also approaches my condition holistically.
-
Donna - I was tired of being
perceived as a hypochondriac, when I knew something was very wrong
with my body.
-
Kris
and Allan - Every day I wish it was me instead.
-
Cindy
G - I could always do things for myself and seldom asked for
help, but now it is a different story.
-
Jessica - I think what is
hardest about this problem is that a lot of people don't believe
that there is anything really wrong with me.
-
Donna - It has been a long
struggle, but I have a great doctor.
-
Jeanna - At this point, for the
first time in my life, I had severely dry skin that was itchy and
there was no relief.
-
Kim - I battle flare-ups on what is almost a monthly
basis and can almost predict the weather by the way my body feels.
- Angela
- I am 24 & both my parents (44&48) have scleroderma and raynauds
syndrome.
- April
- I think I found the right cardiologist and a doctor that is
VERY good in his field.
- Eileen
- So far it hasn't been too painful, but it is progressing
fast.
-
Rebecca,
28 - "I went home and cried but I was so relieved that there was
something wrong with me and I wasn't going mad..."
-
J.
Renà, 19 - "I began to live with it and just wake up each
morning thanking God that I was able to wake up."
-
Rachel,
27 - "Even though I did feel a lot better being out of the cold
I still felt awful for all that I gave up."
-
Dolly
- "I love life and my children so will fight till the very end."
-
Karen,
48 - "My PCP just shrugged his shoulders and said I don't know.
Don't put your hands in an ice bucket."
-
Lisa, 38 - "The hardest decision in my
life was deciding not to have a baby."
-
Karen - "I have problems using my
hands a lot, can't grip things."
-
Amy - "Over the last years, I have had
remissions and gone active again many times."
-
Leila - "I have seen the strongest
person battle everything and come out shining."
-
Kim - "I went to the hand surgeon and
he confirmed to me that I had systemic scleroderma..."
-
Annette - "My family doctor called in a
dermatologist to try to heal the ulcer on my fingertip."
-
Dot - "I just thought I was the ultimate
hypochondriac."
-
Loretta - "I went through physical and occupational therapy for all the stiffness
and my hands and body. "
-
Bettye - "Please say a prayer
for me that I will be able to accept this latest challenge
(interstitial lung fibrosis) and move forward."
-
Michael - "There is strength in
small numbers."
-
Anisa - "My
Raynauds are uncontrollable no matter what medications I've
tried."
-
Deanna - ".I feel almost like I
am starting over with this disease."
- Rob
- "Opening a 2-liter bottle is a challenge."
-
Joanne - "At
this time I was so sick I couldn’t even open my mouth to eat..."
-
Shirley - "I
first found out because of the difficulty in swallowing."
-
Kim Stuurman
- "My
own doctor was telling me over and over again it was because of my
puberty." Dutch and English
- Jamie, her mom has SD - "It’s the little things in
life that we take for granted
- Angie - "I am not really
one to moan about it or let it get me down."
- Irene - "I
have a terrible time getting blood tests, does anyone else?"
- Colleen - "The skin on
my forearms was so hard that a needle would not penetrate it."
- Debbie, 43 - "I did not take the loss of my hearing very well at all."
- Diane - "My hands and feet were swollen twice their size and I was always tired."
- Cheryl - "It was now
confirmed that I had 'Overlap Syndrome.'"
- Theresa, 18 - "I just
didn't want to be around or do anything with anyone anymore."
- Nora Leigh - "...I
am enjoying life."
- Chris - "Sometimes a good
cry seems to help."
- Lori Stewart, 32 (pending
diagnosis) - "My digestive system was such a mess..."
- Terry, 38 - "...the dreaded
'S' word..."
- Rodney, 47 - "I have the
most wonderful wife in all the world."
- Francoise, 44 - "I am
actively involved in the French Scleroderma Association." (en anglais et
francais)
- Daina - "It wasn't easy
then, and even today, I work hard to keep going."
- Greg, 40 - "He told me
something was not right with my lungs."
- Kay - "How was I going to
tell my family?"
-
Mark Weinstein - "It is so important to have a doctor who
is competent and caring."
- Martha, 45 - "I feel like
I'm cold all the way to the bone."
-
Denise, 39 - "They found fluid in the sack around my
heart."
- Nora, 58 - "He told me to go
home and get my life in order."
- Dan - "I understand how
deep the emotional pain runs..."
- Terri, 48 - "Sometimes the
itching awful..."
- Monique, 39 - "Mentally, I
was not ready to have a third child..."
-
Donna - "My mother, 43, was diagnosed with scleroderma
in December of 1995."
- Dawn, 32 - 42,
still going strong, no meds but issues with swallowing every now and
again
- Diane, 41 - "I am using the
tube daily to supplement my oral intake..."
-
Margie Ann, 43 - "They were experimenting with
photopheresis..."
-
Kathleen, 31 - "I was awaiting a lung transplant..."
- Gary - "I concentrated on
keeping my family unit together..."
- Jessie, 16 (mixed disease) -
"The smallest tasks were and effort..."
- Rosalie, 63 - "I travel
all over the world..."
- Janene, 28 - "I've been on
the antibiotic treatment for four months."
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