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Dienne: Morphea with possible CREST

I knew nothing about the disease and went on with my life thinking I had a skin disease.

Dienne Mickey, ISN Scleroderma Awareness ChairAt age ten, I developed a rash on my leg that never went away and would not respond to any treatment. Subsequently, I was diagnosed at age fifteen with morphea scleroderma.

I knew nothing about the disease and went on with my life thinking I had a skin disease. I have the neck ring, and everyone thought I had a dirty neck. I also have the discoloration on my forearms and across my lower back.

Since my initial diagnosis, I have had four pregnancies. One was a miscarriage and my last two were premature. I had four spontaneous pneumothorax (collapsed lung) in three months and severe migraines, two of which resulted in stroke-like symptoms.

I finally saw a rheumatologist about six years ago who told me I had Raynaud's phenomenon and telangiectasias (spider veins) on my hands. Blood work was ordered, but I was getting a divorce and as soon as the divorce was final, I lost my health insurance, so I never went back to the doctor.

These last few months, I have had asthma attacks or tightening in my chest, and heart palpitations. I freeze in air-conditioning, and I have just recently developed lesions on my torso. In just one week the lesions went from size two to twenty-three, with all but one of them being symmetrical. I have also been complaining of joint pain, but my blood work shows no arthritis. I am tired, but do not suffer from diabetes or hypothyroidism (which runs in my family). Since the lesions have appeared, my hips hurt constantly.

I am looking for someone else who may have the same symptoms, as this disease affects us all differently. I am finally going to a rheumatologist at the Cleveland Clinic where they say they have several scleroderma patients, so they are familiar with it. Different doctors have told me that because my test results come back normal, it must be in my head! I know, 'Been there, done that!'

~ Update February 2002 ~

I am now Chair of the Scleroderma Awareness Committee as well as the Graphic Designer for the International Scleroderma Network. I became involved in this as a result of a class project I did for scleroderma awareness while attending Virginia Marti College of Art and Design in Lakewood, Ohio. I earned my Associates Degree in Graphic Design in the spring of 2002.

I have morphea with possible CREST Scleroderma. I have a cousin with diffuse scleroderma, and my only sister has lupus. This is why scleroderma awareness is a high priority for me. I feel that the more people and doctors know about this rare and baffling disease, the closer we come to finding its causes and its cure.

We all need people who understand what we are going through. Thank you for the opportunity to share my story.

To Contact the Author

New email address needed 07-19-06 SLE
Old Email Prefix: dnmickey_99
Story posted 9-3-01
Story update posted 2-11-02
Story edited VH1: JTD 9-5-03

Story Editor V1: Judith Devlin
CREST Scleroderma
Morphea Scleroderma
Pregnancy and 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 Dimitra Stafilia: Daughter of Systemic Scleroderma Patient

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)