If there’s anything worse than contracting a rare disease, it’s coming down with one that nobody has ever heard of.
The human body is full of surprises at the best of times, but there are thousands of people out there who will tell you that those surprises are at their worst when they lead to a mysterious yet chronic condition.
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For some, these conditions are so rare and unusual that doctors can’t agree on whether they even exist. But even when doctors know exactly what’s going on, sufferers of visible conditions can still find themselves running afoul of the general public.
And while these are indeed sad situations, it’s hard to even imagine how hopeless it must feel when no doctor can put their finger on the source of a life-altering problem.
Fortunately, one Missouri man was not only able to overcome this hopelessness for himself, but for others who were looking for similar answers.
When Doug Lindsay of St. Louis was starting his senior year at Kansas City’s Rockhurst College in 1999, he soon fell ill to a familiar yet mysterious disease.
According to People , it was familiar because his mother and aunt were also afflicted with the painful, debilitating condition that left him too exhausted to get out of bed for 11 years.
In his words, “I was in immense pain, like someone had run a cheese grater over my forearms with the room spinning and my heart pounding.”
And while the fact that all of the doctors he had seen were stumped by his condition didn’t help matters, Lindsay was determined to find a way to help himself.
As he said, “What kept me going was knowing that there was something out there that might help me and hadn’t been tried.”
So over the the next decade, he pored through through every medical textbook and scientific journal he could find and eventually convinced a world-renowned specialist to work with him.
Together, they discovered that a tumor-like growth on his adrenal glands was causing his body to produce too much adrenaline. Finally, the disease that had affected his family for so long would get a name: Bilateral adrenal medullary hyperplasia.
But while uncovering his own mysterious disease is already a remarkable achievement, Lindsay even managed to develop his own effective treatments for it.
According to People , he repurposed five different drugs to mitigate his symptoms and once he and the specialist figured out what was wrong with him, he spent two-and-a-half years inventing his own surgical procedure to correct it.
As he put it, “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.”
After another 18 months of assembling a team of surgeons, Lindsay would finally see that growth removed in 2012.
And while Lindsay still relies on an array of prescription drugs to get by, he often takes long walks through St. Louis now that he can again.
And not only was he able to help his mother and aunt as well, but he’s also managed to solve the mysteries behind other ailments he’s come across.
One woman named Jennifer Hackman said that Lindsay figured out her 15-year-old daughter was suffering from concussions she developed while playing sports that were initially misdiagnosed as a blood circulation disorder. Hackman now credits him for giving her daughter her life back and believes he’s a genius.
In Lindsay’s words, “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.”
h/t: People
