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

AJ: Linear Scleroderma

I grew up being poked and prodded and paraded in front of one specialist after another.

Straw Hat with Flowers, photography by Shelley EnszI have had linear scleroderma since 1968, when I was seven years old. I always felt like I WAS scleroderma, as I have never met anyone else with the same diagnosis.

I grew up being poked and prodded and paraded in front of one specialist after another. Sometimes whole classes of medical students were brought to look at me.

Scleroderma affected the left side of my body, wrecking havoc in a very short amount of time. My left leg is two and a half inches shorter than my right and much smaller.

Due in a very large part to my mother's persistence and nightly therapy, I have good use of my leg and arm. Also, I believe Dr. Claybaugh, who treated me at Wesley Hospital in Wichita Kansas, saved my life in more ways than one. Mainly by finally fixing on a diagnosis and listening to my mother and her thoughts and feelings regarding my illness.

I did not realize how much I had to say, I have never discussed scleroderma with anyone. Most doctors I have seen since my last visits with Dr. Claybaugh (1974?) do not even know how to spell scleroderma, let alone treat any problems I might have that are associated with this disorder.

I am so fortunate that my scleroderma stopped advancing with only small advances on my right side. But I can say that scleroderma affected my life and still affects me in ways incomprehensible to "normal" people. I remember wishing as a child that I had polio instead. People could spell it and while they did not understand it's dimensions, it was accepted in ways scleroderma never was. Weird, huh?

I am sorry for the little girl I was with scleroderma. I enjoyed no personal space, was so sick for so long. The agony of my limbs slowly drawing up is something I cannot describe accurately, and besides, it is a private matter. But I am also happy for the little girl who had the extreme luck of meeting a fine physician such as Dr. Claybaugh and the many physical therapists who were endlessly patient with a mad little girl who tried to hate them all.

Well, that is such a small part of my story, but I hope it finds it's way to a mother with a sick little girl. If it does, do not despair. I have a good life. I have a good job, own my own home, my own car. But the best thing of all, something the doctors warned my mother I would never have—two beautiful, healthy children!

To Contact the Author

AJ Miller
(AJ we need your new email address.)
Posted 3-1-99
Linear Scleroderma
Types of Scleroderma
Go to Alana: Scleroderma (Peru)
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.