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Craig R: CREST Scleroderma

In Loving Memory

I had my first scleroderma symptoms at age twenty-two, which included severe Raynaud's with some ulceration and tissue loss.

As of May 2004, I am forty-nine years old. I had my first scleroderma symptoms at age twenty-two which included severe Raynaud's with some ulceration and tissue loss. I was diagnosed with idiopathic epilepsy (grand mal) at age fifteen, which is completely controlled by medication which I have been taking since age fifteen.

I have had calcinosis in finger tips, some sclerodactyly (tightened skin on fingers), and some telangiectasias, mostly on the face. I have some loss of lung diffusion due to pulmonary fibrosis.

Over the past five years I have developed tinnitus (ringing in the ears), along with mild hyperacusis (hypersensitivity to sounds) and Sjogren's syndrome. I do not drink, do not do drugs or smoke, and I maintain my ideal weight.

There is, however, a family history: My father had scleroderma which progressed to glomerulonephitis and interstitial pneumonitus. He was treated at the Scripp's Clinic in San Diego. He responded well to prednisone and cyclophosphamide, but died two years later of lung cancer (small oat cell) at the age of fifty-nine in 1984. He had a history of very heavy smoking, but quit thirteen years before acquiring lung cancer. So there is some mystery as to whether the lung cancer was due to previous smoking or scleroderma.

The most interesting part of the story is that I went through an autologous stem cell transplant at the UCSD Medical Center in San Diego, California, in January of 2003, for treatment of Burkitt's Lymphoma. The lymphoma seems to be gone. It is now sixteen months since the transplant. My antibody tests are very much the same as before the stem cell transplant. About eight months after the transplant I developed very severe Raynaud's, far worse than my earlier bouts, and all but my pinky fingers became ulcerated. I had extremely painful attacks (the pain was worse upon reheating the hands, like the hands are on fire or have hundreds of needles being pushed through). A combination of medications has greatly improved this situation.

I also have peripheral neuropathy in my feet. This came about with the cancer treatment - it was supposed to go away, but perhaps because of scleroderma, I still have it after sixteen months. Bruxism has also been a problem especially during the day rather than at night. I have also had slower than normal restoration of my bone marrow. I must still take Procrit sixteen months after the transplant, or I will be quite anemic. I hope someone finds this useful.

In Loving Memory

Craig passed away on January 19, 2015 from complications of scleroderma. Read his obituary. We all miss you, Craig!

To Contact the Author

Craig R.
Story posted 06-09-04 SLE
Story updated 04-20-15 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Autologous Stem Cell Transplant
Calcinosis
Cancer and Scleroderma
CREST Scleroderma
dental involvement
glomerulonephitis
hyperacusis
peripheral neuropathy
pulmonary fibrosis
Raynaud's
sclerodactyly scleroderma
Sjogren's
telangiectasias
Free PDF Brochure: What in the world is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

Photo of JudithJudith 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!

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