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

Tammy M: Linear Scleroderma and Vitiligo

"There was a time when I did not have scleroderma."

Camellias by Sherill Knaggs, ISN ArtistAlthough I can't remember what it was like, there was a time when I did not have scleroderma. When I was eleven I was involved in a ATV (All Terrain Vehicle) accident. My foot got caught between the tire and the fender and it ripped up the side of my ankle pretty bad. We were out in the desert, so needless to say, the wound was full of sand and eventually ended up getting infected. But it healed up, or so I thought.

A couple of months later, I dropped a one pound bottle of hair conditioner, cap first, on the instep of my foot on the same leg. That formed a rather large bruise which faded to a purplish scar.

A few months later, those two wounds kind of joined together in a linear fashion and began traveling up my leg. It looked like a rope or a braid on the back of my leg. I lost a lot of flexibility in that leg. After a year of doctors with blank faces and no answers, which enraged me for at least the next ten years, my mom and I happened upon someone who actually knew what I had and she diagnosed me with Linear Scleroderma. I took d-Penicillamine for awhile, but being an angry teenager at the time, I was not a very good patient.

For much of my adult life I have lived with some form of denial and have not been actively seeking treatment. Unfortunately, the scarring is continuing to progress, albeit slowly.

I now have some lesions on my tailbone and spine that are beginning to concern me. The skin is so thin on my tailbone and there are no fat deposits, so sitting has become quite uncomfortable. Within the last six months I have also developed Vitiligo.

After seventeen years of dealing with scleroderma and somehow getting through the tortures of adolescence relatively unscathed, the Vitiligo has brought out many insecurities and fears. I jokingly say, "I now have spots to go with my stripes!" But all joking aside, I am approaching a point where I think I am ready to start fighting this on a variety of levels.

When I was first diagnosed there was no such thing as the Internet. I always felt that my family and I were the only ones in the world who knew what scleroderma was. Now I am in the process of trying to find a doctor, a sensitive one, who is willing to help me even though it isn't a disease that will kill me. I may see a nutritionist and a physical therapist, and maybe even a therapist to start talking about all the things I never dealt with because being in denial was the only way I could cope.

To Contact the Author

Tammy
New email address needed 07-19-06 SLE
Old Email Prefix: tasada
Story posted 9-19-02
LINKS
Difficult Diagnosis
Juvenile Scleroderma
Linear Scleroderma
Scleroderma
Vitiligo

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 Tammy W: Morphea Scleroderma
 
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including memorials for
Jim Miller, Arlene Marie Petulla, Frances Maude Baldwin Watson and Rubye Mai Blocker Westmoreland.
Thanks to Winn Schillberg for donating to scleroderma research.
Donate or Shop Now
 

TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!

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. Privacy Policy.
 

The most important thing in the world to know about scleroderma is sclero.org!

Donate Now
Copyright 1998-2017, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.