It was one or a combination of Fate, Destiny, Kismet, Serendipity, Chance, Luck or other that brought Dr. Fogel and I together. I had been searching for a diagnosis for my worsening mobility, balance and other bodily function impairment for some five years, at multiple facilities and with many practitioners both in and beyond Los Angeles, to no definitive avail, when my case came to the attention of Dr. Fogel, at UCLA. One thing that impressed me early on was Dr. Fogel’s reporting. Doctors write lengthy reports after seeing patients, as a key part of the patient’s medical record. I had seen many reports by doctors through the course of my quest and, while all well intentioned and laced with professional jargon, most if not all reports I had read up to this time contained inaccuracies and/or omissions. But Dr. Fogel’s reporting was on another level. It was one hundred percent accurate in detail and fully complete, like no other I had seen. This in itself won me over and gave me full confidence in him, something that I hadn’t known up till that point with other specialists. I really believed that Dr. Fogel could give me diagnosis. When there is confidence, all parties are empowered. In late 2010, after over seven years of testing and hoping, Dr. Fogel gave me a definitive diagnosis of Adult Polyglucosan Body Disease, a rare, untreatable, inexorably worsening genetic condition that affects mainly Ashkenazi Jews (Eastern European heritage). Dr. Fogel got me into a clinical trial at Baylor in Dallas and, while this didn’t pan out, it led me to connect with Susan Coddon, Dr. Jeffrey Levenson and other members of the Adult Polyglucosan Body Disease Research Foundation (www.apbdrf.org), a tight knit group of fellow sufferers and carers, mostly around my age, who together wield and radiate a powerful dynamic of experience, wisdom, concern and pro-activism. One initiative is that I now dedicate my photography exhibits to raising awareness and support for APBD. Here, I’ve invited Dr. Fogel to speak at the opening reception of my current exhibit in Santa Monica and, not surprisingly, he is a raconteur of the highest order, giving attendees a comprehendible understanding of APBD. Whether by Fate, Chance or other, I am eternally grateful to Dr. Fogel for my diagnosis and all else resulting from our connection, and for illuminating my path.
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