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

Matilda: Systemic Scleroderma

I wanted to tell you all this, because I hope that for you things may go better.

MatildaI was diagnosed with scleroderma three years ago. At that moment I was just relieved that I was diagnosed with something as I got sick about six months before I was diagnosed.

It was absolutely the worse time of my life. I went to the doctor at least twice a month. I got boils all over my body. The GP first thought it was my thyroid. Then she thought I had some viral infection and so it just went on and on until my hands and fingers got so stiff that I could not close my hands anymore. She then sent me to a rheumatologist who diagnosed me immediately with scleroderma.

I did not even know such a disease existed. Actually the only thing she told me at that first appointment was that I had a autoimmune disease. I went on to the internet to see what an autoimmune disease was and there were hundreds of diseases. I went back about a month later and asked her what autoimmune disease I had. She told me then that I suffered from scleroderma.

Within a few months my skin got hard, tight and stiff. My arms itch all the time. I got so frustrated, but nothing I took helped. About a year later I got a sore on my right index finger. Eventually it got so bad that it had to be amputated. It was then that I realized the seriousness of the disease and that I had to look after myself and be very careful.

Now I live with the disease. I still itch like crazy and some days it makes me crazy. I see a psychologist and that really helps a lot. I still work, I still drive my car and I still try to cook now and again, although my hands are useless some days. My family and friends have been very supportive, especially my husband.

We were only married for a few months before I got ill and he has taken over most of the household chores. He looks after me as I can't bend down to put on shoes and everything is hard to do. So in the morning he helps me get ready for work, puts in my lunch and sets all the settings in my car. He has never complained once when I ask him to do something for me.

It is not an easy disease and I am very limited as to what I can do. It makes me sad that I cannot do as much as I could before I got ill, but if anything, it showed me the kindness of people. My colleagues at work, family and friends have been extremely understanding and supportive. Even complete strangers will help me pick things up if I drop something or help me put change in my purse, etc.

At the moment I am probably in a stable condition. Nothing serious has happened to me in the last year. The disease is by no means dormant, but it does not seem to be getting worse. I also hope that some day soon they will find a cure for this crippling disease.

I don't think there is a lot of support in South Africa and I would actually like to start a group where people with the same disease can meet and discuss how they cope with the illness. I feel that only people who have the disease know what I am really going through.

Matilda: Systemic Scleroderma (South Africa) I don't think there is a lot of support in South Africa and I would actually like to start a group where people with the same disease can meet and discuss how they cope with the illness…

To Contact the Author

Email [email protected]
Story posted 09-24-2010 SLE
Difficult Diagnosis
Difficult Diagnosis Stories
Digital Ulcers
Digital Ulcer Stories
Emotional Adjustment: Coping
Emotional Adjustment Stories
Gangrene and Amputation
Gangrene and Amputation Stories
Skin Fibrosis
Skin Fibrosis Stories
Systemic Scleroderma
Systemic Scleroderma Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Scleroderma
Types of Scleroderma
What is Scleroderma?
Go to Maxine D: Cousin of Scleroderma Patient

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.