2017 Stepping Out Long Island NY (Tri-State Chapter)

Team Dott

Thank you for visiting my team page!

So what is Scleroderma?
Well it was a word I didn't know the meaning of, the severity of and most certainly the impact of.

For the "quick and dirty" scleroderma is an autoimmune disease in the rheumatic disease family and effects the connective tissues. For those of you who like root words “scleroderma” comes from two Greek words: “sclero” - hard and “derma” - skin. Scleroderma does not only effect skin but the tissues in organs such as the esophagus, gastrointestinal tract, lungs, kidneys, heart and other internal organs - hardening them and ultimately resulting in organ failure.

So now that we got that out of the way, let me tell you why you’re here on this very page.

My mom was diagnosed with scleroderma in July 2011 after being misdiagnosed for years as rheumatoid arthritis and psoriasis. Too be honest I think she knew about it long before she told me, but at this point that’s neither here nor there. It was certainly not a glamorous disease: days, weeks, months in hospitals, rehab centers, and ultimately at home hospice being fed, changed, poked and prodded by strangers. Unfortunately the disease progressed very quickly and she ended up passing away the following June. In hindsight, it was probably fortunate that it was less than at year because the quality of life was truly minimal.

Now for everyone who knew my mom, you could say that she was …eccentric, peculiar, or “something else.” She believed in signs and witches and ghosts and all that jazz. As for signs, one day last year I came home from work and found a letter promoting this event – the date was June 5th, which coincidently is the anniversary of her death. So I took it as a sign that maybe I should start participating. Given that this event will probably continue to fall the first week of June every year, it is probably one of the best ways to honor her and bring awareness to this terrible disease.

To be honest, from a health care point of a view I don’t know if a cure in the near future is possible. What I hope to accomplish from this event is simply awareness – awareness to make a proper diagnosis, awareness to ask your doctors the right questions and awareness that there is this pretty cruddy disease out there that no one seemed to know anything about.

I also wanted to say thank you to everyone who donated and walked with me with year. Last year our team was able to raise over $2000, and I hope to surpass that goal this year.

Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to support us and help raise funds for scleroderma patients.  Just click the button on the left “Support ‘My Team Name’ ” and follow the steps.

If you would like to walk and help raise funds click on “Join ‘My Team’ ” and select “I want to attend the event and register” button and follow directions.  There are many pages of help in the Help tab.

Over 50% of all of the Tri-State Chapter’s funding for research, education and support programs is raised by walk donors and walkers – please help today.  Many thanks for your support -- and don't forget to forward this to anyone who you think might want to help.

Help us in the fight to bring awareness and a cure to this horrible disease.

If you would like more information about scleroderma or the Tri-State Chapter please see the link below.

THANK YOU!

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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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