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Peter: Burn Survivor with Scleroderma
My left hand had contracted so much that I had to wear a protective piece of plastic on my palm to prevent my fingernails growing through the skin

Lighthouse for Peter by Ione Bridgman, ISN Artist In 1996 I was badly burned by by an electrical flash over in a substation and I had to undergo skin grafts to large parts of my body. After twelve months I was well enough to return to work though not in the job I had been doing. My life gradually got back to normal until I noticed my right elbow was getting very stiff. I went back to see the plastic surgeon who had done my skin grafts and various treatments were tried. These included emollients and intensive physiotherapy all to no avail.

After these treatments failed it was decided that an operation would have to be performed to release the ever stiffening elbow. I got as far as the operating theater and was given a general anesthetic. When I came to the surgeon told me he had changed his mind and had not done the operation and further tests would have to be done. I had a biopsy done which proved inconclusive and the surgeon seemed baffled.

Eventually my other elbow stiffened up and my fingers became swollen and stiff. Many months went by and the doctors seemed completely bemused by my condition. Eventually the skin of my legs became hard and shiny and I was having increasing trouble walking. Also by this time my left hand had contracted so much that I had to wear a protective piece of plastic on my palm to prevent my fingernails growing through the skin. At this point I underwent another biopsy, this time with skin from my legs. The results confirmed I had scleroderma. I also have Raynaud's along with that.

Although it is not nice to be told you have an incurable condition, I was relieved just to know they had at last found out what was wrong with me. My case was handed over to a rheumatologist and I was treated with several medications. At the time of writing this my condition has greatly improved my legs are almost normal and some of the movement has returned to my hands. Although I cannot work at the moment, my life is getting back to normal and I am starting to enjoy myself again.

I think the hardest part all this for me was not knowing what was wrong with me and I hope that for the sake of others that diagnostic techniques improve in the future.The strange thing about all this is that the areas where I had skin grafts did not go hard like the surrounding skin and remained soft and supple.

In conclusion I would like to say to fellow sufferers do not be afraid to ask for help. All my friends and family helped me in my worst times and helped me maintain a positive attitude which I still have today.

To Contact the Author
Peter
Email: breezypete@fsmail.net
Story posted 08-25-04 SLE

Story Artist: Ione Bridgman
Story Editor: Judith Devlin
LINKS
Difficult Diagnosis
Diffuse Scleroderma
Graft vs. Host Disease
Medications
Raynaud's
Raynaud's Stories
Sclerodactyly
Scleroderma Clinical Trials
Types of Scleroderma
ISN Artist: Ione Bridgman
Ione Bridgman ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our  Voices of Scleroderma Book Series .
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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