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Jamie: Surviving Spouse of Progressive Systemic Sclerosis Patient

I hope more men will post their stories because scleroderma is rare in men.

Flowers for Jamie by Shelley Ensz 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

Email: [email protected]
Story posted 11-11-00
Story edited VH1: JTD 8-21-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Causes of Scleroderma
Heart Failure
Raynaud's Phenomenom
Voices of Scleroderma Volume 1

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!

Go to Jan: CREST Syndrome

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.

International Scleroderma Network (ISN)