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

Susi Q: Surviving Daughter of Scleroderma Patient

Giving up is never an option. Making the best of it, is. I learned that from my dad.

White Camelia by Sherrill Knaggs, ISN Artist In 1994, life stopped for my father, James Crocket Hall. After four years of wondering and going from doctor to doctor, he finally had an answer: scleroderma. He was twenty-six. What was scleroderma?

We were told to go to the library and read about it. Then he got some pills and was told to come back in three months. My mother and father did read about it and then we understood how bad this news really was. Five to seven years left to live, they read, and that was all my father could remember.

My mother said to me once, "That was the day Daddy got tired, and he stopped being tired in December 1996. That was the month you were born!"

After the news we changed doctors really fast and soon we had a wonderful team of special doctors and nurses working with us to make life as good as it could be with scleroderma. As time went on he got sicker. He kept on playing and laughing with me. My father tried anything and everything to feel better. When he could not move his fingers anymore he was "Claw Man.". He even changed all his tools around for his hands so we could still build and paint miniature models. We loved going to the movies and out to dinner.

When his kidneys stopped working he had this strange machine at home that helped clean his blood every night. He was now "Bionic Man", he told me. I will never forget that. My Daddy was and still is my hero.

He passed away in 2003. He told me not to be to sad too long. He said he will be sitting on a cloud with his oldest blue jeans, leather jacket and really, really long hair looking down on me and making sure that I will not get in too much trouble.

I miss him very much! Mom and I stop and look at the clouds from time to time. The thought of him up there with long hair makes us smile. Giving up is never an option. Making the best of it, is. I learned that from my dad.

To Contact the Author

Email: [email protected]
Story edited 11-20-06 JTD
Story posted 11-27-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Survivor Stories
Types of Scleroderma
What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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 Suzy H: Mother of Daughter with Morphea
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!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.