Scleroderma

Scleroderma is a rare autoimmune disease. Depending on the type, it can be one of the most horrific diseases imaginable, showing up on many top 10 worst disease lists.Severity of symptoms can vary significantly from person to person. Unfortunately, scleroderma is rare enough that it does not get the attention that it should. A type of scleroderma, systemic scleroderma (sometimes called systemic sclerosis) can impact the entire body's connective tissue and often comes in conjunction with Raynaud's syndrome. The following is from Mayo Clinic:

Scleroderma (skleer-oh-DUR-muh) is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.

In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.

Scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50. While there is no cure for scleroderma, a variety of treatments can ease symptoms and improve quality of life. (from Mayo Clinic's website)

The National Scleroderma Foundation is an excellent resource for information on the disease and has helped raise awareness for this rare and challenging disease. The National Scleroderma Foundation is one of the most effective and trustworthy charities, receiving extremely high marks from watchdog groups for their use of donated funds.

Ron was diagnosed with systemic scleroderma to kick of the new year in 2016. He has been fortunate to be doing extremely well and have limited symptoms. The course and severity of the disease varies significantly from person to person. Ron wants to spread the word and help others who may not be as fortunate with the disease. Ron has presented at several of the National Sclerdoerma Foundation's conference. He has presented on various topics, including on stress management, the challenges of being newly diagnosed, dealing with grief, and the psychological aspects of scleroderma. In 2022, he began facilitating the Newly Diagnosed Support Group (virtually) for the National Scleroderma Foundation. People from across the country (and internationally) have attended the support group.

Artist Paul Klee suffered from scleroderma and his late work, such as "Death and Fire" are inspired by his struggles. Read more about it below.