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Several of the scientists disagreed with Lindsay’s hypotheses about his ailment. During his talk, Lindsay argued that a certain drug might help him. He was just a scientist living an experiment in his own body. He tried to comport himself like a grad student or a junior colleague to the scholars in the audience, not like a patient. Lindsay arrived at the conference in a wheelchair, wearing a suit and tie, and presented himself as a Jesuit-trained scientist. To get there, Lindsay bought a row of airline tickets so that, with the help of friends, he could lay across several seats during the flight.Īt a research conference, Lindsay tried to convince specialists he had a disease that didn't appear in their textbooks. In 2002, he give a presentation about his disease at the group’s meeting in Hilton Head, South Carolina. The best place to find that person, he reasoned, was at the American Autonomic Society’s annual conference, attended by scientists from around the world who focused on nervous system disorders. Lindsay soon decided he needed a partner – not just a physician but a scientist curious enough to take on a rare case and spend long hours with him parsing it out. He convinced a researcher who believed in him None of the diseases the foundation was examining fit Lindsay’s pattern of symptoms. He asked the foundation to send him literature about emerging research in the field. Lindsay soon stumbled on the website for the National Dysautonomic Research Foundation, delighted that an entire organization was dedicated to researching the type of disorder plaguing him and his family. He cobbled together cash for a computer, had an old college roommate bring it over, and got to work. Using a stash of aging medical textbooks, Lindsay hypothesized that a whole class of autonomic nervous-system disorders could exist beyond the established categories of what most endocrinologists or neurologists knew about. He zeroed in on his adrenal glands, which sit atop the kidneys on either side of the lower abdomen. In it, he found an important passage discussing how adrenal disorders could mirror thyroid disorders.īy the time he was 22, Lindsay was almost completely bedridden. While in college he had picked up a 2,200-page endocrinology textbook near a garbage can, hoping to use it to figure out what condition his mom had. That’s when Lindsay he realized he’d have to figure his predicament out on his own. When one doctor was out of ideas, he referred Lindsay to a psychiatrist. He saw specialists from endocrinology, neurology, internal medicine and other specialties.
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Lindsay immersed himself in medical research, determined to find a way out. “If I was up, it was because I was eating or going to the bathroom,” he said. He found answers in discarded medical textbooksįrom the fall of 1999 onward, Lindsay was bedridden about 22 hours a day. “When I called my mom that night to tell her I needed to drop out (of college), we both knew,” he said. Rockhurst UniversityĪs a teenager, watching his family members sidelined from life, Lindsay wondered whether his body was a ticking time bomb, too.įinally, that day in 1999, the alarm went off. Rockhurst University in Kansas City, where Lindsay was a student before a mysterious illness forced him to drop out in 1999. Lindsay’s aunt also developed the same ailment, growing so feeble she couldn’t tie her own shoes. After years of tests, she determined her condition was related to her thyroid, but she was too sick to travel to the Mayo Clinic to get more specialized care, Lindsay said. She lived for decades, mostly bedridden with the same condition that stole her son’s twenties. She did manage to pick him up one more time that year, when he was choking on a jawbreaker. Whatever was wrong with him ran in the family.īy the time Lindsay was 18 months old, his mother was so weak she could no longer pick him up.īy the time he was 4 she could no longer walk. When people hear Lindsay’s story, Novack said, they often say, “I can do something similar for my kid.” “He did something extraordinary,” said John Novack, spokesman for Inspire, a healthcare social network for rare and chronic-disease patients. His journey since has amazed medical professionals.
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Today Lindsay tells his remarkable story to audiences around the country, including at a TEDx event in St.