Stepping Out to Cure Scleroderma - Long Island

Team Cole

Thank you for visiting my personal page for the Step Out to Cure Scleroderma Yearly Walk.

In August 2008, I was diagnosed with Scleroderma, although I was misdiagnosed with Lupus from December 2007. Scleroderma, or systemic sclerosis, is a rare chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease and it can cause damage to internal organs including the lungs, heart, kidneys, esophagus and gastrointestinal tract.

I have Diffuse Systematic Scleroderma. Along with Scleroderma came severe Calcinosis of my hands and ears, Sclerodactyly (contractures of my fingers), Esophageal Dysmotility, Muscle Weakness, Loss of Joint Range of Motion and Raynaud's disease. In October 2017, I was newly diagnosed with Pulminary fibrosis and gastroparesis. In 2018, I showed signs of Lupus so it's possible that I've had it all along! This past winter, my tests reveal stress in the kidneys so I am working with my specialists to narrow it down!

This will be my sixth year participating in the walk, whether in person or virtually and I hope to continue this feat for years to come. Unfortunately, we don't get much funding from Congress and continue to fight for our own bill. I will continue to FIGHT FOR A CURE while raising awareness and involved with funding research until a cure is found. I humbly ask that you join me in supporting the cause to finding a cure for Scleroderma. If you are unable to attend this event, any donation is welcome. Please join Team Cole, together we can make a difference! Many thanks for your support…..and please share this with anyone who you think might want to help!!

To learn more about the Scleroderma Foundation, please visit www.scleroderma.org today!

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If you would like more information about scleroderma or the Tri-State Chapter, please go to www.SclerodermaTriState.org.

 

 

 
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