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Jamie: Surviving Spouse of Progressive Systemic Sclerosis Patient

My husband Jerry was diagnosed with scleroderma at age thirty-five in January 2000. He was told that he had Raynaud's phenomenom in October 1999 and was sent to a specialist who diagnosed the scleroderma.

Prior to the Raynaud's diagnosis, he was fairly healthy, but he began to lose weight and complained of stiffness in his knees. Not in a million years did we think his scleroderma would progress so quickly.

In April 2000, we went to the hospital because he had shortness of breath. We were told that he had heart failure and pneumonia, and he began a series of medications to prevent the heart from failing.

In July 2000, he also began treatment for scleroderma again. His scleroderma doctor in Philadelphia told us that he had good news and bad news. The good news was that we came to him and could possibly “catch up” to the disease. The bad news was that it was progressing rapidly.

My husband used to take over seven different medications a day. This was terrible on the psyche of a man who was very active and considerably healthy prior to all of this. To make a long story short, he had terrible pain in his hands from August until he passed away on October 23, 2000.

He went to the hospital with shortness of breath and he was told that he had pneumonia again and that his heart had deteriorated even more. His cause of death was listed as cardiac arrest, pneumonia, and scleroderma.

This is a terrible disease for anyone — even your worst enemy. The pain in his hands was so bad that he used to say it would knock him out. He was still employed as a teacher and managed to drive to work, although my children and I couldn't understand how he did it.

I just want to say that my husband was courageous in many ways, even though he lost the battle. He was confident that a cure would be found in his lifetime that would help others. The disease is so peculiar that I still question whether or not more immediate attention should be given to research for a cure. I am anxious because no one knows if it is hereditary or not, and my children still have to grow up.

I am thankful for the ISN's website for allowing others to share their stories. I tried on many occasions to find more awareness through other websites such as this one. I hope more men will post their stories because scleroderma is rare in men.

To Contact the Author

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!

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