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Joy: Mom of Cassi, Who Has Morphea

I went home and started to research everything I could find on the disease. I did not like what I found.

A Summer Afternoon by Shelley Ensz Shortly after I started a new position at a local casino, my older daughter, Lauren, told me that she had noticed bruises on her sister Cassi's chest when they were taking a bath. I carefully checked Cassi's bruises when she came into the living room. Cassi, age six, said that they did not hurt and that no one had hit her.

I watched her carefully for several days and the bruises did not change. When Lauren went to the pediatrician that week, I also had him check out Cassi. He seemed unconcerned, but said to check back with him after one week, if they remained unchanged.

I was still concerned, so I took her with me to a dermatologist's appointment I had that week. The dermatologist immediately suspected scleroderma and performed a biopsy of the largest bruise. The biopsy was positive for morphea scleroderma. I went home and started to research everything I could find on the disease. I did not like what I found.

With no real promising information available, I went to talk with the dermatologist again. An autoimmune disease had to start from some type of irritant, I had surmised, so we spoke of her problem with processed meats. Meat had caused digestive problems for her since birth, but fresh game meats did not bother her. I put her back on a natural diet of fresh fruits, vegetables, and venison immediately. Within three short weeks, the disease had completely stopped progressing.

Slowly, the six or seven areas affected lost their odd coloring and now appear as slightly discolored spots (similar to that of a kid who refuses to wash behind his ears). The largest affected area has some deep collagen problems and has since torn as she has grown, but no new areas have surfaced.

She is now almost sixteen and continues with her natural diet with a couple of fast-food burgers snuck in about once a month. We believe that the steroids, dyes, antibiotics, etc., used in cattle and meat processing, are part of the problem for Cassi. We also live in a high incident area for the disease.

When Cassi was nine, a first-grade student at her school died of scleroderma; a man I grew up with died from the disease; another schoolmate of mine, who is now a hospital administrator, has a rapidly progressive form of the disease; and a Pequot Indian woman who worked with me to try to find the cause of Cassi's morphea also has had problems with scleroderma. These people all have lived within a five-mile radius of each other for most of their lives.

Cassi is thankful for each and every day that she is unaffected by a new outbreak of her disease, and we pray that a cure will be found for her and all the other people affected with morphea.

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: revjoyp
Story posted 2-10-02
Story edited VH1: JTD 8-19-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Causes of Scleroderma
Morphea Scleroderma
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

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 Joy W: CREST Scleroderma

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)