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

Morgan: Daughter of Scleroderma Patient

A daughter's worry.

My mother has scleroderma. She was diagnosed last year. When she first noticed her symptoms, her lips were swelling and so were her eyes. Her friend told her she was around the age where she might have lupus, so she went and got tested.

Her doctor said that he thought she might have scleroderma. He then sent her to many doctors in different cities. Eventually she went to the Cleveland Clinic where she was diagnosed with scleroderma. She did not really know what it was so the doctor kind of filled her in by telling her that it was a disease that turns you into stone. He told her a little more about it and then when she came home she told me.

I did not really know what it was and I got really scared. My mom told me that some people have died from the disease. I still get worried when I see her in the morning and she is all puffy. Her eyes are always swollen shut and her hands will not even close.

She went on disability and has a lot of trouble moving. She takes about twelve pills of medicine a day and I am concerned that it is too much medication.

I wish I could help her get rid of this disease, but all I can do is help her through it. If anyone out there reads my story and answer a few questions for me so I can know that there are other people going through the same thing that my mother is going through I would really appreciate it. Thanks. Here are my questions:

1: Can you really die from this disease?
2: How many people have scleroderma?
3: Has anyone ever took any medicine to help them through it and beat it?
4: Is there a possibility you can take too much medicine?

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: bumpmarump2006
Story posted 06-10-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Caregiver Stories
Free PDF Brochure: What in the world is Scleroderma?
Scleroderma Experts: SCTC
Systemic Scleroderma Symptoms
Treatments and Clinical Trials

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 Moroni: Husband with Systemic Sclerosis

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.