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Malen: Linear Scleroderma

Philippines

I was diagnosed with linear scleroderma when I was twenty years old. We had a lot of difficulty finding out what was wrong with me and we went to several hospitals and doctors here in the Philippines.

My symptoms included severe cramps in my right leg, where the pain is pushing me to my limits. Often times, I would have cramps in the middle of my sleep and while I was driving. I am always shaking during my attacks because of the pain, and I would cry, thinking that it may help alleviate the pain a little. My leg and arm on the right side of my body are smaller. There are also a lot of spider veins on my right side.

It is a good thing that my family, relatives and friends are all supportive of me. My mother's friends helped us source for D- Penicilamine which I am suppose to take three times a day at the start. We got this medicine from Australia, Hong Kong, Canada and the USA. It costs us so much since we are just an average income earning family. I stopped taking this after five years, when I had rashes all over my body.

I know I had to fight this disease since it is there already and there is really no cure. I have learned to accept the fact that I am so gifted and that is why I was given this "special" disease. Depression was my number one enemy back then, but I am glad that I was able to overcome it.

I am now almost thirty-three years old, on my first pregnancy (I am six months on the way) and enjoying every minute of it. I am aware of relapses but I have strong faith that I will never be alone in this. It is always a blessing to have such a wonderful family and a very loving and supportive husband who understands my condition.

I hope that all scleroderma patients will never lose hope and realize how beautiful life is.

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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.