SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
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

Kathy P: Localized Scleroderma

I spent a lot of my young life at the Children's Clinic at Vanderbilt Hospital in Nashville, Tennessee

Butterflys for Kathy by Shelley Ensz Hello, my name is Kathy. I am a forty-seven-year-old white female. I was diagnosed with Focal or Localized Scleroderma (Juvenile Scleroderma) at the age of eighteen months.

I spent a lot of my young life at the Children's Clinic at Vanderbilt Hospital in Nashville, Tennessee. I do not remember any of my treatment, but do have a report of my case that was included in The Journal of Pediatrics in March 1962.

Surgeries and skin grafts were done to loosen the tightness of the skin when I was very small. The disease affected the right side of my body and while I was young, I was fitted with a special shoe, to lengthen my right leg in order for me to walk at a level pace.

I was terrorized by other children at school making stupid childish remarks, so eventually I stopped wearing the shoe to avoid the harassment.

I married at the age of sixteen, and had my first child at the age of seventeen. I have two of the healthiest children that anyone could ever wish for. I am still married to the same man after thirty one years.

I just lost my wonderful mother in 2001, and until now, I never even thought of asking more questions of the past. I want to talk to more people about this disease and learn more about it.

To Contact the Author

Kathy P.
New email address needed 08-06-09 SLE
Old Email Prefix: maypar
Story submitted 10-31-02
Story posted 11-8-02

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Juvenile Scleroderma
Localized Scleroderma

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 Kathy R: Localized Scleroderma

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.