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Lisa A: Spouse of a Systemic Scleroderma Patient

I know that there is no cure, but I pray each day that a cure will be discovered.

Ribbons for Lisa by Shelley Ensz My husband was diagnosed in July 2000. We did not expect to hear he had scleroderma, and at first, neither of us understood what it was. His doctor had run a lot of tests and given him medicine to take. There were so many pills, but none of them worked.

We were finally sent to a specialist, who sat us down and gave us the news that would change our life forever. My husband and I were in shock and ould not speak a word. My husband has always been very healthy throughout his life. He played in sports in high school and was always very active.

After we left the doctor's office, we both just sat in the car and cried and cried; the tears just kept coming. He is a good man who does not deserve what was to change his life forever. He is a great father of two teenagers, a hard worker, and great husband. I know no one deserves to have scleroderma.

We had decided not to tell our kids until the time was right. We got home and right away my daughter asked, "What does daddy have?" I just started to cry all over again, so we had to sit both of them down and tell them. They were so upset and did not understand what it was or why it happened to their daddy. Our son, who is the strong-minded child, was in tears. He told my husband that he would help him in any way he could. My husband and son were always playing catch with the football, but now he cannot do that because his hands are always in pain.

I know that there is no cure, but I pray each day that a cure will be discovered. My husband is very young, only thirty-six years old, and scleroderma does not run in his family. Well, now we take each day at a time. We have our love for one another to beat this and win!

To Contact the Author

Lisa A.
New email address needed.
Old Email Prefix: ealvarado
Story posted 12-19-00
Email address updated 3-29-03
Story edited JTD/V1 7-27-03
Email note posted 01-21-05 SLE

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Caregiver's Stories

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This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

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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