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Christene: Limited Scleroderma

I was diagnosed when I was just nineteen and at that time it was one of the scariest moments of my life.

My name is Christene and I have been living with Limited scleroderma for five years. I was diagnosed when I was just nineteen and at that time it was one of the scariest moments of my life. I felt I was being punished and blamed myself for not looking after my health.

I did not have any real support as my parents lived in Western Australia and I had just started a relationship. It was very hard for my partner to cope with this new illness and it put a lot of stress on the begriming of our relationship but somehow we coped and stayed together for four years.

My main fear was what was I going to do with my life. I was so young and did not know how was I going to cope with scleroderma. In 1999, I was admitted into a hospital three times with very severe ulcers on the tips of my fingers. At that time I was terrified of needles and had to have quite a few, so I soon got over those fears and have become quite used to regular blood tests.

In the last five years I have had three operations on my right index finger, two on my left index finger and most recently two on my right thumb which was difficult as I am right handed. I have also suffered from a blood clot in my right leg, fluid on my left lung, and reflux esophagitis.

I believe that I can live a full life even when things get me down and although I do not have a career set in my future, I know I can succeed in anything I put my mind to. Although it has taken me five years to accept this illness I have remained strong and know that I am not going to die young, well, at least I hope so.

I know scleroderma is hard to get used to, and I have found it difficult to come to terms with it. I believe we can succeed at anything we put our mind to, as long as we remain true to ourself and stay calm when things go wrong.

This is my short story and I hope it may also help some other scleroderma sufferers with the journey in life, love and the big wide world.

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.