Photo: Joe Martinez
For much of the next 11 years, Lindsay was often too exhausted to climb out of bed.
“I was in immense pain, like someone had run a cheese grater over my forearms with the room spinning and my heart pounding,” Lindsay, now 44, tells PEOPLE in this week’s issue.
Eventually realizing that doctors couldn’t help him, Lindsay set out on a crusade to save himself. Against all odds, he not only ended up repurposing five drugs to alleviate some of his symptoms, but also convinced a world-renowned specialist to work with him. After they correctly theorized that a tumor-like growth inside his adrenal glands was the cause of his illness, Lindsay then pioneered a surgical procedure to remove it.
“I had a mission,” says Lindsay, whose findings have improved the lives of his mother and his aunt, who also struggled with the rare disease, known as bilateral adrenal medullary hyperplasia. “But what kept me going was knowing that there was something out there that might help me and hadn’t been tried.”
Lindsay in 2002.Matthew Krentz
During his search for answers, Lindsay — who immersed himself in medical textbooks and science journals — soon learned that he was one of countless Americans facing a medical nightmare that doctors are often powerless to solve.
“We know that 25 million Americans suffer from a rare disorder and probably 80 percent of those have a name and can be diagnosed,” says Dr. Chris Gurnett, chief of neurology at St. Louis Children’s Hospital. “But that leaves tens of thousands of individuals with different conditions that physicians can’t put a name on. And without a named diagnosis, it’s hard to get treatment.”
Through his research, Lindsay eventually discovered that an abnormal growth in his adrenal glands was creating an overproduction of the energy-regulating hormone adrenaline in his body. Then, he spent two and a half years developing a surgery to remove the growth, and another 18 months assembling a team of surgeons to perform the procedure.
“As crazy as it sounds for a patient to invent his own surgery, it was a logical path because of the research I had done,” says Lindsay, who eventually underwent two separate surgeries to remove the growths.
Since his final surgery in 2012, the once-bedridden patient — who still relies on a battery of prescription drugs — has regained his strength and can often be foundsharing his amazing story with audiencesor going for long walks through his hometown of St. Louis.
For more on Lindsay’s incredible journey, pick up the latest issue of PEOPLE, on newsstands Friday, or subscribehere.
He also works with patients suffering from the same type of hard-to-diagnose disorders that he once suffered from.
Adds Lindsay: “It’s such beautiful blessing to have my life back and to take what I’ve learned and be able to help others. I really do have to pinch myself sometimes.”
source: people.com
