SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Melinda F: Granddaughter of Systemic Scleroderma Patient

Her condition has progressed throughout the years, yet she always seemed infallible.

[Picture] 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.

To Contact the Author

Melinda F
New email address needed 12-20-06 SLE
Old Email Prefix: mindyjo99
Story posted 2-10-00
Story updated 10-31-00

Story Artist: Shelley Ensz
LINKS
Skin Fibrosis
Skin Ulcers
Gastrointestinal Involvement
Survivor's Stories
Go to Melissa: CREST Plus
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

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. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.