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Mark: Systemic Scleroderma

They told me I had scleroderma and that I would live maybe five years.

Hi, my name is Mark and I was diagnosed with systemic scleroderma in 2003.

I first noticed Raynaud's in the early 1990s, but I had no idea what was causing this numbness and discoloring of my fingers. As time went by I noticed more fatigue and joint pain thinking nothing of it, because a man has to earn a living. I continued this until I could no longer force myself to work.

It wasn't until 2003 when I finally saw a doctor. They told me I had scleroderma and that I would live maybe five years.

By 2004, I had to move in with my dad and he helped me through the worse months. I could not do anything for myself. I was in and out of hospitals because of internal problems and I was ready to give up.

Today I thank my dad and the doctors for their hard work and putting up with me.

At one time my pain was so intense I had to take a lot of painkillers daily, not to mention handfuls of other meds. I feel the cytoxan helped me get to where I am at today.

My biggest issue now is loneliness and depression since there are no support groups in my area. I only wish I had a significant other to help in my day to day living.

Scleroderma has changed my looks drastically, so I am on my own. My weight is down to one hundred and twenty pounds, I used to weigh one hundred and ninety pounds.

This story took me forty-five minutes to type, but at least I am still fighting this thing called scleroderma.

To those of you new to this disease please do not give up, there is hope.

To Contact the Author

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.