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Do you know what scleroderma is, or ever heard of it? Chances are that you haven't. That is why the Scleroderma Foundation has declared June to be National Scleroderma Awareness Month.
Scleroderma is a brutal and chronic autoimmune disease. The name is derived from the Greek words sklerosis and derma and literally means "hard skin." A sufferer's skin may gradually thicken, harden, and contract. Scleroderma is considered to be both a rheumatological (involving inflammation of muscles, fibers, and joints) as well as a connective tissue disease. Other symptoms and effects can include cardiomyopathy, hypertension caused by renal failure, thickening of the blood vessels, and syndromes such as CREST, GERD, and Raynauds (characterized by improper blood flow to the extremities, leading to ulcers, infections, and amputations of fingers and toes.) It can be very difficult to diagnose; patients often go years undiagnosed or misdiagnosed.
There are approximately 300,000 cases in the US as of 2006 (source: NWHIC.) This figure is increasing at an alarming rate; it was estimated to only be 8900 in 1996. While it can affect anybody, women between the ages of 30-50 account for 75% of cases.
We are not without hope however. The Scleroderma Foundation is dedicated to improving the lives of those affected by scleroderma through support, education, and research. To celebrate this National Scleroderma Awareness Month, the foundation is holding an annual "Stepping Out To Cure Scleroderma" walk at 40 locations in 22 states. One such event will be held at the City Center in Syracuse on Saturday, June 27th at 7:00 A.M. Pre-registration costs $15, or it is $20 the day of the event. For more information, please visit http://www.autoimmuneutah.org/.
Auto-Immune Utah is a fledgling online support community for those affected by any autoimmune disease, including friends and family of the sufferer. Chances are you know and love someone who is dealing with one of these awful diseases. Autoimmune disorders are the fourth largest cause of disability among women in the US. They are as varied as they are debilitating; some of the more common are multiple sclerosis, lupus, rheumatoid arthritis, myocitis, psoriasis, type 1 diabetes, and of course scleroderma. It is widely believed that finding the cure for any one of these will unlock the door to curing the rest of them.
So please assist us in spreading the word about these illnesses that we may pave the way for researchers to find cures that will improve and save the lives of millions.