Scleroderma

Scleroderma is a chronic, progressive autoimmune disease. While it is considered to be a rare disease there are estimated to be between 300,000 and 500,000 Americans. Eighty percent are females who are between 30 to 50 years old at onset. The occurrence is about 30 people per 100,000 and four times more women than men are afflicted. By comparison there are more people diagnosed with scleroderma than many other well-known diseases combined. Until the Scleroderma Foundation received the support of people like Jason Alexander, Bob Saget, Pavarotti, Sheryl Crow, Chris Rock and race car driver Kenny Wallace funding for research was difficult to get. They have all helped the Scleroderma Foundation raise awareness and funding through their efforts and work.
Healthline.com	Scleroderma from A to Z
The Scleroderma Foundation	Symptoms of Scleroderma
What in the World is Scleroderma Brochure	Test Your Knowledge of Scleroderma
Washington University	Links to some associated conditions
University of Michigan Health Services	Scleroderma - Cause - Diagnosis - Symptoms - Treatment
How bad can it be? On the A to Z site is a list of "Associated Conditions" http://www.sclero.org/medical/symptoms/a-to-z.html

In about 1996 I was diagnosed with Systemic Scleroderma. When the doctor told me he suspected that I had an auto-immune disease called Scleroderma I didn't really think much about it. After all, how bad could a disease that I had never heard of be?

I am the one others came to for information. I didn't smoke, I exercised, I ate lots of fruits and vegetables, and I kept up to date on the latest advice for a healthy heart and body. After I was diagnosed with hypoglycemia in about 1979 I quit eating sugar and sweeteners. When I started seriously riding my bike I gave up red meat. When someone called me a "health nut" I would say, "I am the one taking care of my body and you are not - who is the nut here?"  

Was I arrogant about it?  Yes, I was. I still am. I sometimes get angry. Not because I have scleroderma and I am struggling with the many aspects of the disease. I have believed that exercise and eating right was the answer to many ailments that afflict the mind and body. I still believe that exercise and proper eating is the single most important thing that we can do for our minds and our physical body.  I know I am alive and working today because I was a "health nut". I started serious bicycling in my mid 30's and at 45 I rode my first 100 mile trip. I loved biking and I miss it tremendously. I believed I would one day be riding again. I know now that I never will be and it makes me sad.

When I am coughing out of control and my lungs are begging for air I get angry at the people who can do something to avoid this kind of thing and don't.   I know it isn't easy to quit smoking but take it from me it is a whole lot harder when you quit breathing.  

Secondhand smoke is a major issue that is being addressed by many communities. It is good to see that they are banning smoking in spite of the uproar by the businesses. Many businesses have already gone smoke free and continue to have waiting lines and full bars. A business that offers good service and good products will certainly survive! In a report recently released by the Surgeon General there is no safe level of secondhand smoke. Smoking is not a right it is a life style choice. Smokers should not have the right to shorten my life.

I am extremely sensitive to cigarette smoke. Even the slightest bit can send me into coughing seizures that can last up to 30 minutes and be very painful. Since I have started doing all that I can to keep myself in a smoke free environment my coughing is less severe and my breathing has improved a great deal. Keith has quit smoking after about 50 years and our home is a smoke free zone. I have to call ahead if I am going to visit someone who smokes so they can air the house. I use Ozium Air Sanitizer and walk across the street to avoid smokers. Sometimes I have been unable to enter a building because the entrances are blocked by people who want to have that last smoke before going into the office. I find this frustrating beyond words.

I certainly thank the State of Illinois Legislature for having the courage to pass the smoking ban in public businesses!

Among the Conditions that Scleroderma can cause:: click on the links for more information

Lung Fibrosis - Lung Disease - Lung Involvement
Esophageal and Gastrointestinal Tract Involvement
Esophageal Reflux
Secondary Raynauld's Phenomenon - blue fingers
Extreme shortness of breath
Non-Productive Coughing
Dental - shrinking of the mouth and gums and sensitivity of teeth
Renal Scleroderma - kidney involvement
Eyes - redness around the eyes and sensitivity and Pellucid marginal degeneration
Joint and back pain
Osteoarthritis - Degenerative arthritis in the spine
Voice - extreme hoarseness
Some treatments for various symptoms

From Karen Berndt's book "What's so funny about having scleroderma?"
Karen passed away in 1999. Unfortunately I don't believe the book is any longer in print.
It is a good lighthearted look at a very serious subject. If you manage to find a copy for sale buy it!

Last Updated: January 29, 2008