My mom, Mary, was diagnosed with diffuse scleroderma with CRESTwhen she was only in her early twenties. She has now had it for over twenty years. At a very young age I was told that my mom suffered from a rare disease. So I told my mom that when I grew up I was going to become a doctor and find a cure for her.
As I got older I noticed slight changes in her appearance. Red spots began appearing on her face, neck, and hands. As time went on, she lost a lot of weight. She was always sick with sinus infections, pneumonia, and upper respiratory tract infections. She never tried to find a doctor that was familiar with this disease.
I went to BOCES nursing program while attending high school. I graduated in 2000, and I got my nursing license in 2002. After going to school, I found myself paying closer attention to her health. I noticed that she was having severe, uncontrollable fits of coughing and that she seemed to be having a hard time breathing. I asked one of the doctors I worked with whether they knew of any good physicians who had any experience with scleroderma. Luckily he gave me a name and my mom went to see him. After meeting the doctor she decided that she really liked him and switched doctors. He immediately did blood tests and sent her to a cardiologist, pulmonologist, and a scleroderma specialist.
Over the years we had all been in denial, ignoring the fact that we knew that she had a serious disease that can be fatal. Her visit to the specialist gave our whole family a reality check. The doctor said she may need a lung transplant if the damage to her left lung is as severe as he believes it is. That news was given to us over two weeks ago and it is just sinking in now.
On November 5, 2002, we will find out if she definitely needs the transplant. I know that I speak for my whole family when I say that we are nervous wrecks. My brother and I already told mom that if she does need the transplant that we want to be tested to see if we are a tissue match. That way if we are, she won't have to be put on a donor list. She doesn't like the idea of us doing that. Hopefully the doctor will give us good news. Until we find out, all we can do is pray.
New email address needed 09-14-06 SLE
Old Email Prefix: nursemary8302
Story posted 11-24-02
Vol. 2 matching edits 01-20-05 SLE
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Story Editor: Judith Devlin
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This story is featured in the book Voices of Scleroderma Volume 2
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.