My name is Bobbi. I am almost 34 years old and I live in Nova Scotia, Canada. I am employed as a Technical Analyst and I am awife and mother of three.

In October of 1999 I went to my family doctor due to some large patches of discoloration on my right hip and my right arm in the triceps area. He thought some type of skin fungus and suggested using an anti dandruff shampoo applied as a topical cream to the affected areas. After doing that some of the spots actually got sore and scaly. So I stopped and he sent me to a dermatologist in November of 1999. The dermatologist did a biopsy of the spot on my hip. The biopsy came back and he reported that the results indicated Morphea; however he was not sure he agreed as my symptoms did not match. He said it was no big deal and there wasn't a lot that could be done. He said the spots were permanent. He could prescribe some cream however it was very expensive and not likely to improve anything. So I went home and thought nothing more of it.

This is where my story is similar to yours. In December 1999 a "mound" appeared on the back of my right hand. My fingers felt tight and swollen, the back of my hand was warm to touch, I could not fully extend my wrist up or down, I could not make a fist, and any force (like playing pool, tossing a ball) applied or exerted by my right hand caused terrible pain…enough to make me cry. The skin was tight and it could not be pinched.

So, off to the doctor I went again. He thought tendonitis this time and sent me off for physiotherapy. After 6 weeks with no improvement my physiotherapist was reluctant to continue as she felt it may not be tendonitis and whatever it was, therapy may be making it worse. So it continued to worsen and confuse my family doctor. By March my fingers were in a cupped position all the time and I could not fully extend them and my hand and wrist ached constantly. My doctor prescribed Celebrex but nothing helped.

In March 2000 I was a passenger in a car accident which affected my left side (neck, shoulder, upper left back). My focus was shifted from my hand to therapy for my new injuries. Now I had a new spot on my right shoulder, completely different from the others. It is a thick, white, raised spot.

In April 2000 I began having pain in my lower legs, especially my right. My doctor was even more puzzled and concerned as my issues seemed to be completely right sided. I could no longer crouch to tie my shoes or get down on my knees and sit back on my heels to play with my children. He made a referral to see a doctor of internal medicine and a Rheumatologist. My appointment was in May to see the Internist and in September to see the Rheumatologist.

The internist had no explanation for me either. He did blood tests and physical tests but could not diagnose my problem. I was to return to see him in June for a follow up. The last Saturday in May, I was sitting on the edge of the sidewalk watching a parade with my family. When it was time to go home and I stood up, my feet were so swollen I had to remove my shoes to walk, and my right, lower leg was swollen to twice its size, was tight and shiny. We went home and I went to bed and elevated my legs….back to the doctor on Monday. Puzzled once again, he sent me directly to the hospital for blood tests to rule out blood clots. Again, nothing showed up in my tests to indicate what was wrong. So I went home to live with yet another symptom with no cause.

Now I had difficulty walking. When I would get up in the morning, I had stiff and painful ankles. As the day went on, it got better, but I still limped noticeably. If I sat for any period of time, the stiffness came back and if I stood my calves ached. I found it very difficult to come down flights of stairs as weight bearing on one leg was quite painful and impossible. I had to take one step at a time like a toddler. My hand was terribly affected as now my little finger was completely curled and I was unable to straighten it, the flexibility and range of motion for my wrist had ceased to exist, and there was constant nagging pain.

By mid June I had my follow up with the internist who had no answers but promptly sent me for an ultrasound, as my right leg was still noticeably bigger that my left. The ultrasound again found nothing to indicate a source for my symptoms. The radiologist and technician joined the growing group of medical professional who were stumped by my symptoms and acted as though I was a mystery to modern medicine.

So I anxiously waited for the time when I would see the rheumatologist. When the day came, I went to her office. She spent 15 minutes with me, told me it was Generalized Morphea, there was no known successful treatment, but it was highly unlikely that it would develop into the scleroderma, which could be fatal. "I am sorry, but there is nothing that can be done" she said.

I was devastated. I called my dermatologist and expressed my frustration with him that he did not explain to me that all of these things could happen to me because of Morphea. I was angry and scared and had spent a year wondering if I was slowly dying. So now I didn't even have hope…no one knew how long it would last, how many parts of my body would be affected, or how much more pain I would have.

This is what I knew:

• I knew that it was unlikely that I would die as a direct result

• Each spot had three cycles:
1. initial inflammation;
2. thickening\scarring (darkening or blanching of pigment);
3. softening and fading.

• The scarring could cause atrophy if over joints, specially joints with very minimal connective tissue (like wrists, ankles, fingers)

• Once the third cycle began, there could be some relief of the stiffness as the spot relaxes.

• There is no way to know how many times this will happen in my lifetime and each spot has its own lifetime with no known or estimated time frame for each cycle.

• It is described as an autoimmune disease where your immune system attacks connective tissue.

So I began trying to accept it and live as best I could with it. Then in November of 2000, the Rheumatologist called me. She said she had been thinking about my case and asked if I would be interested in attending Grand Rounds in December 2000. I agreed immediately and some hope was restored.

At Grand Rounds I was seen by approximately 30 doctors (dermatologists and rheumatologists). From that visit I was placed under the care of Dr. Klotz in the hospital dermatology clinic to begin PUVA (phototherapy) in January 2001. The PUVA is supposed to speed the cycles up so it goes into the third cycle more quickly, reducing the time it has to cause scarring.

I went to the hospital on Monday, Wednesday, and Friday. I soaked in a tub of clear water with a syringe full of a clear medication in it for 20 minutes. Then I went into a tube like a tanning bed for incrementing intervals of time….I started at 7 seconds and finished in April 2001 at about 10 minutes. The whole process took about 30 minutes, not including the waiting in between rooms. Realistically it took an hour to an hour and 30 minutes each time.

By April I could straighten my fingers and the flexibility and range of motion in my wrist had improved. I was no longer struggling to walk and the swelling was gone in my legs. Now, based on what I know, I am not willing to say it was the PUVA treatment that improved my symptoms, as it may have been the amount of time and the affected areas may have just run their course. All I know, is that doing something was a whole lot better than not trying anything for me mentally.

So that is my story. As of today December 30, 2003, I have dark spots on both my ankles, my right hip, my inner thighs, under my right breast from my side to the center of my chest, my buttocks, and my right triceps area. My hand has spots with no pigment and the skin on the back of my hand is like it is glued to the bone in my hand. The skin on my ankles is like that too. I have shiny skin that looks like it is bruised on my right forearm on the underside. The spot on my right shoulder has turned dark from the lack of pigment it had initially. The spot on my right triceps is thick and seems like there is a tight cord through the middle of it. There is a thick spot on my left calve about the size of tennis ball that is dark and blanched and very thick.

I have days where my hand aches, and it still isn't back to normal. I am walking fine and only have aches in my ankles and legs from time to time. I get lots of sun when I can and that seems to help. I have learned that life goes on and I had to learn to cope. I went though a period of depression due to pain, and the stresses of work and family. I am a very independent person who does not always know how to ask for help...but I needed it. Everyone going through this kind of thing needs help and support...so get some!!