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Review for In Need of Diagnosis, Orlando, FL, USA

Rating: 5 stars  

There are no words to describe the positive and potentially life-saving impact of " In Need of Diagnosis" to a patient desperately seeking to identify and treat an unknown condition which they fear, left untreated, will take their life. As a multi-decade undiagnosed patient-survivor, I can attest, firsthand, that it is often this pre-diagnostic stage that is the scariest and most life-threatening. Given the thousands of rare diseases that exist, many of which the average doctor may never see in his entire career, desperate patients are confronted with physicians unfamiliar with their symptoms... and, as a result, dismissed and/or demeaned, (without necessary treatment), left to flounder in unknown territory--with no medical backgrounds-- as they do everything in their power to save their own lives. It is during this transitional stage that "In Need of Diagnosis", and the support is offers, is invaluable. When no one else hears, INOD does, when compassion seems non-existent, INOD exudes it, when patients feel they have no one to turn to, INOD is there. Having seen over one hundred specialists, nationwide, in an attempt to unsuccessfully determine what was causing me to inexplicably lose vision, jolt awake to a background of millions of twinkling stars against a black background,-- with a force that catapulted me off my pillow, ( multiple times every night), drool, become urinary incontinent, twitch, fall into walls, lose the ability to swallow without choking, etc., it became painfully apparent that not every patient is diagnosed easily. Fortunately, my diagnostic search ended with an accurate diagnosis and appropriate treatment for my life-threatening disease...almost two decades later ! As a result, I vowed I would do everything in my power to prevent others from experiencing the diagnostic nightmare I was subjected to...but I wasn't quite sure how to go about it. Then I read an article in AARP magazine where INOD and their mission to help the undiagnosed was recognized--and I immediately knew what I had to do. I wrote to the Executive Director, Marianne Genetti, also enclosing a copy of the book I wrote detailing my experience, "But, Doctor, You're Wrong!". Subsequent to receiving it, she called me and we talked extensively about INOD's goals, the need for a specialty in "Diagnostics", how the organization supports the undiagnosed and many other aspects of this compassionate and informative organization. I told her I was looking for an avenue to share my ideas and concerns...and, after speaking with her, realized I'd found it. I was honored to be invited to be a member of The Board because it is associated with a concept I believe strongly in. While it is unrealistic to expect every doctor to know each symptom of the thousands of rare diseases in existence, (or the atypical ways in which they can sometimes present), it is unconscionable to turn such ill patients--possibly even life-threatened ones-- away. INOD doesn't do that...though they do not diagnose, they listen actively and offer support as appropriate. No matter how alone or unheard they might have felt in the past, undiagnosed patients know from their initial contact with INOD that they no longer are...which means more than words can say at such a vulnerable time. My only regret is that INOD wasn't in existence when I was searching for a diagnosis--but the important thing is that it is now !

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Role:  Board Member