SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

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

Email: [email protected]
Story posted 08-25-04 SLE

Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Difficult Diagnosis
Diffuse Scleroderma
Graft vs. Host Disease
Raynaud's Stories
Scleroderma Clinical Trials
Types of Scleroderma

ISN Artist: Ione Bridgman

Ione BridgmanISN 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

Photo of JudithJudith 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!

Go to Phyllis: Morphea

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.