Skin Like a Rock but the Words Get Through

Scleroderma affects about 300,000 people across the U.S. In comparison, the same number of people are affected by multiple sclerosis. Still, you probably have never heard of it or seen a fundraiser or research study involving scleroderma. Scleroderma is a chronic, progressive, autoimmune disease in which the immune system attacks your body. The word literally means “hard skin'” or skin like a rock. It can cause a thickening and tightening of the skin and can be very painful. The tightening of the trunk and core makes it hard to breathe and inhale.


In some cases, it causes severe damage to internal organs. This damage can occur in your joints, lungs, heart, kidneys, liver, and esophagus. In addition, the gastrointestinal tract is often attracted. It is often difficult to swallow food and to go (number 2). As scarring, or sclerosis, of these organs and organ systems progress, they work less effectively and can lead to organ failure and death. Some medications and treatments can help with specific symptoms, but there is no cure for scleroderma.


Scleroderma causes fatigue and falls in some patients. For me, severe pain, choking, dry mouth, low vision, inability to eat solid food, constant ear infections, skin ulcers, uncontrolled drop like sleep seizures, falls, Reynaud’s disease, soar & stiff immovable hands, and poor coordination are just a few of my daily struggles.


The worst part is the sadness, the sadness, and the loss. Fear is painful and crippling, and the fear of the unexpected is terrifying. The mistakes I made and the mean people that I have encountered. Realizing how many people do not care for you hurts badly.


Treat people kindly. You do not know what they feel. You cannot know what anyone goes through.


I challenge you all to practice love and kindness.

I will love you forever
I will be with you always
As long as I'm living
My baby you'll be

The Thing was still a Superhero.


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