Melinda F: Granddaughter of Systemic Scleroderma Patient

My grandmother was diagnosed with systemic scleroderma approximately twenty-five years ago. I was a toddler at that time, and I can always remember the contracture of her hands. I have watched as she outlived every doctor's prediction based wholly (I believe) on her determination to survive.

Her condition has progressed throughout the years, yet she always seemed infallible. All her skin has the tight, waxy appearance typical of the disease and she has lost all her hair. During the past two years she has begun to rapidly decline and I fear that the disease may win in the end.

She has recently suffered a transient ischemic attack and is now unable to drink fluids normally. Her entire gastrointestinal system is affected, and hence her weight has dropped to under one hundred pounds. Skin ulcerations common to the disease plague her as well. My reasons for sharing this information are simple.

The doctors predicted she would live approximately five years past her initial diagnosis. Her determination to survive around the disabling aspects of this disease have already given her twenty years longer to enjoy her life (and I truly believe she has).

I am not sure I would have the strength to live as fearlessly as she has, but I hope that her strength can give hope to others. My thoughts and blessings to all who suffer from this disease as well as their families and friends.

~ Update 10-31-00 ~

cleroderma lost it's battle with my grandmother. She has outlived her diagnosis by over 25 years through a sheer determination to live her life. She's dying now, they expect within days. But she won. And I will always consider her the most determined, strong, infallible woman I have ever been blessed to know.

Her name is Agatha Hines, and Grandma I am so proud of you. My blessings to patients/caregivers/families affected by this crippling disease./p>

And Grandma, I love you. We all do.