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MDS: Getting Over the Identity Crisis

Although 19,000 people are diagnosed with MDS in the United States each year, it continues to be a disease with an identity crisis. Sometimes mistaken for Muscular Dystrophy, Myelodysplastic Syndromes has only relatively recently been classified as a cancer of the bone marrow and blood. Indeed, for years, those diagnosed with MDS were often told they had a “terminal” illness: doctors didn’t always know how to label it, let alone how to cure it, with the exception of a dangerous and often unavailable, bone marrow transplant. Little understood and far more common than people realize, MDS must step out of the closet and into public awareness.

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The Trouble with Labels

In 2014, I wrote a book called Nine Lives, A Story of Survival and Hope, an autobiographical account that focused on my battle with MDS, a kind of blood cancer (For more information, visit here.)  In the process of looking back on my struggles, some “themes” begin to emerge. I saw that my nine lives were as much about reinventing myself as they were about surviving myriad obstacles and beating the odds.

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