My father was diagnosed with scleroderma twenty-two years ago. I remember well the day the doctor informed my father, mother, and me of his findings. He told us that there was no cure. A knot formed in my stomach. It was the same knot that came back on February 9, while listening to the doctor outside of my dad's hospital room tell me that we were going to lose him.
My father held on to see all of his children and grandchildren before falling into a peaceful and eternal sleep. It was a most spiritual and heartfelt transition, although we are left with a deep void. It happened so fast, once it started, that now as I look back on it, I don't know if there was anything that could have saved him. I want to believe that the doctors did all they could.
Still, I miss him terribly and have decided that I want to become involved in making others aware of this disease. I was amazed that people knew very little about scleroderma and the many forms it can take.
In memory of my dad, I would like to change that.
For all of you who have loved ones out there with the disease, hold them close and relish each and every day. I know I did and when my daddy lost his battle, I know that we gave it our all.
I believe that, in time, a cure will be found, and knowing the type of man my father was, he would want that, in spite of the fact that it could not save him.
To all of you, be strong and hold onto your faith.
Story posted 2-21-02
Story edited VH1: JTD 8-20-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
ISN Scleroderma Awareness
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!
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team or Volunteer.
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Ask for our Welcoming Email!
Toll Free US/Canada Scleroderma Hotline
*5-13-2015: This is a temporary number while our usual 1-800-564-7099 is being ported to a new provider.