Doug Lindsay started his first day of his senior year in college collapsed on a dining room table with the room spinning around him.
And this state, or something like it, would be his condition for the next 11 years.
No doctors understood it. None of the treatments worked. No one had any answers.
While Doug’s condition at this point may seem extreme, we in the rare and orphan disease community know this story far too well. Entire families’ lives are placed on hold while they search for a rare diagnosis. The emotional and mental stress on families grows as each day passes with no answers.
However, Doug’s story, as you will hear on today’s episode takes a unique turn at this point. He took his diagnosis and treatment into his own hands.
I don’t want to spoil the particulars of the story for you. Because it is equal parts inspiring and frustrating. Doug’s persistence has paid off for him and his family. But, even the fact that someone with a rare condition would have to engage in a fight for his life, is condemning. Especially when that fight is with more than overcoming a debilitating condition. The real fight was with health care.
If you, like me, care anything about making health care for people with rare conditions better each day, then you, like me, will be both inspired and frustrated with what you are about to hear. My hope is that you feel a call to action. If Doug’s story strikes a cord with you, I hope that you decide, today, how you will make health care truly patient first.
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Doug Lindsay got sick at 21 and spent the next 11 years home bound and bed bound until he figured out what was wrong, developed novel treatments to keep his rare autonomic-adrenal condition at bay, and eventually developed the innovative surgery used to fix him.
During Lindsay’s 14-year medical odyssey he worked with 35 senior faculty at 28 institutions, developed new uses for 5 existing prescription drugs, won a national first court case protecting patients’ rights, and developed the concept for the two successful, innovative adrenal surgeries used to treat his case. Once he recovered his health, Lindsay returned to Rockhurst University and finished his biology degree.
Now, Doug Lindsay is a nationally recognized speaker on role of hope and character in innovation and in life – speaking at TEDx, Stanford Medicine X, Dell Medical School UT-Austin, the Society for Participatory Medicine, the Health Management Academy, the American Healthcare Association, and elsewhere. As a keynote speaker he is represented by the BrightSight Group out of New Jersey.
He is a Community Advisory Board member for Washington University’s Institute of Clinical and Translational Sciences and Institute for Public Health.
Doug Lindsay also provides an in-depth Personal Medical Consultant service to a small number of rare disease and complex condition patients who’ve found themselves trapped in the medical system.
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