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Lisa D: Morphea Scleroderma

I was about eleven and terribly frightened as I thought it would keep spreading and I would never be able to go outside again and be a normal kid.

I am Lisa and have been a patient with Morphea scleroderma for twenty-eight years. I first noticed it when I was seven years old. It started as a dry patch of skin on my right arm.

It took three years before I was diagnosed. I was put through a series of very unpleasant tests, all the while it was spreading through my body. The doctors insisted that it would burn itself out eventually, but it did not.

It spread very quickly into my right hand, leaving it bony and deformed. I was about eleven and terribly frightened as I thought it would keep spreading and I would never be able to go outside again and be a normal kid.

My mum and dad were desperate for help and tried to find a solution through the church, hypnosis and spiritual healing. The last two I did not bother with. I wanted to believe the doctors.

I will be thirty-five in a couple of months and although I am happily married with a ten-year-old healthy daughter, I am facing the prospect of losing my left hand to this disease. I am still scared. I still feel unable to cope at times. My hands feel frozen and painful and I dread winter. I go to occupational therapy when it gets really bad. The hot wax machine gives me a little relief, and have also tried those thermal hand warmers that you just shake.

I am not sure if I am just more sensitive than some but I have had a lot of pain with this. I really sympathize with everybody who is living with this.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith 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!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.