What is Scleroderma?

Scleroderma is a chronic, often progressive, autoimmune disease in which the body's own immune system attacks itself. The disease, which literally means "hard skin," can cause a thickening and tightening of the skin. In some cases it causes serious damage to internal organs including the lungs, heart, kidneys, esophagus, and gastrointestinal tract.

Some medicines and treatments can help with certain symptoms, but there is still no cure for scleroderma, which affects about 300,000 nationwide (more than breast cancer).  Although 80% of scleroderma patients are women, more men are being diagnosed with this debilitating disease.  

 What scleroderma is not

Scleroderma is not contagious, it is not infectious, it is not cancerous or malignant.

What causes scleroderma?

The exact causes of scleroderma are still unknown, but scientists and medical investigators in a wide variety of fields are working diligently to make those determinations. It is known that scleroderma involves overproduction of collagen causing the skin to become thick and rigid.

How serious is scleroderma?

Any chronic disease can be serious. The symptoms of scleroderma vary greatly from individual to individual, and the effects of scleroderma can range from very mild to life-threatening. The seriousness depends on what parts of the body are affected and the extent to which they are affected. A mild case can become more serious if not properly treated. Prompt and proper diagnosis and treatment by qualified physicians may minimize the symptoms of scleroderma and lessen the chance for irreversible damage.

My Story

I was diagnosed with systemic scleroderma in December of 2006, although I exhibited some symptoms of the disease for a couple of years prior to that.  Unfortunately, many scleroderma patients go undiagnosed for years, but fortunately for me, a change in my primary care physician yielded the diagnosis after only two visits.

During a business trip to Chicago in late December of 2006, I received an emergency call from my rheumatologist to go to the nearest ER for a blood transfusion.  This was necessitated by the loss of blood through my stomach lining due to "watermelon stomach," which is a condition of scleroderma.  After returning home the following day, approximately 30 transfusions followed during the next seven months to counteract the anemia caused by the blood loss.  Thanks to many friends and supporters at Plano ISD and in the community who donated more than 1000 units of blood.  As a result of their efforts and the services of a wonderful team of doctors, I have been transfusion-free since July 2007.

Unfortunately, I was recently diagnosed with mild to moderate PAH (Pulmonary Arterial Hypertension) and have begun treatment for that condition.  Hopefully the medication will expand the blood vessels between the right side of the heart and the lungs to reduce the pressure and relieve the stress on my heart. 

I continue to remain relatively active as a band adjudicator and educational consultant, although my hobbies of golf and motorcycling are on hold for now.  I am optimistic that my condition will improve and that I will be able to resume many activities that I enjoy soon.  Your thoughts and prayers are much appreciated, and your contribution to the Scleroderma Foundation DFW Walk will benefit so many.   

What's Going On Now

I am excited to announce our 1st ever Texas Bluebonnet Chapter "Stepping Out To Cure Scleroderma" DFW walk located inside the Grapevine Mills Mall on June 28th. The walk begins with registration at 8:30 am and concludes by 10:00 am.  The Dallas Support Group has joined forces with the Tarrant County Support Group to ensure that our first walk is the best Texas has ever had.  Please join us at the walk to support our patients, raise pledges, and personally meet our board of directors.

Remember, as we raise funds we also raise AWARENESS.

           If you prefer to donate by check please mail and make payable to:

                                                     SF-TBC
                                                 PO Box 1836
                                               Allen, TX. 75013

                  (please reference Tucker-DFW in the note section)

Many thanks to our generous offline contributors, Ben and Sherry Easterling, James and Linda Flack, Jeana and Eric Burt, James and June Bearden, Jack and Martha Brown, Toni and David Austin, Mary Tucker (Larry's Mom), Wayne and Jo Ellen Burnett, and Thomas and Marian Griggs.