When Doug Lindsay, a 21-year-old college student, first began to feel sick, he received a diagnosis of mononucleosis and was told to stay home and rest for the summer. He did, but when classes resumed in the fall, Lindsay felt no better — in fact, he was feeling weaker and weaker and experiencing episodes when his heart would race as if he were sprinting when he was just lying in bed.
That began his 14-year journey through the medical system in pursuit of a cure.
“I saw doctor after doctor and they couldn’t tell me what was wrong,” Lindsay said at a panel discussion at Stanford Medicine X (and shown in the clip above). His mother had been sick for most of his life with an undiagnosed illness that involved muscle rigidity and chronic pain, and he came to realize, “I probably had what my mother had.”
Determined not to suffer indefinitely, Lindsay “decided to tackle [his] problems like a scientist.” He reached out to researchers and friends in medical school for copies of papers. He scanned the medical and scientific literature looking for something rare – “I scoured the world for what I needed,” he said.
He presented a poster — as a 24-year-old college dropout in a wheelchair — at a scientific conference with the hopes of securing a collaborator. It didn’t work right away but he didn’t give up (as most of likely would). He did find a scientific partner 18 months after the conference – and it was eventually discovered that he had adrenal medullary hyperplasia, a very rare condition.
It turned out he needed surgery — but the best example of the surgery he could find was done more than 75 years ago, in dogs. Here, truly, most people would have quit. Instead, Lindsay developed his own surgery.
With the help of dozens of experts — ranging from bioethicists to veterinary pathologists — he developed a lengthy (several hundred pages) document that included all the relevant papers related to the surgery and his condition, and he built a model of his adrenal that clearly marked where surgeons would need to cut.
So, how did he enlist the help of all those very busy, powerful people? Lindsay said he followed simple rules. “I would work as far as I could before asking for help.” He told researchers: “I’ve looked here and here and here,” but I couldn’t find it. That gave the researchers a puzzle. He would ask each researcher for a limited amount of help that they could contribute in a short amount of time. And he was dogged: In an effort to obtain information from a Japanese research group, he even enlisted the help of the Japanese ambassador’s son, who happened to be a physician, because he realized that sending an email in a foreign language asking researchers to help him with a surgery he had invented in his living room probably wouldn’t be successful.
“We were dealing with really unknown territory,” Lindsay said. After more than two years spent assembling a team and convincing officials from the U.S. Food and Drug Administration, among others, the surgery was done — and it was a success. “My recovery was complicated, but it paid off,” he said.
Lindsay offered tips for other patients facing uphill battles. First, do your homework before doctor’s visits. What are do you need/want to get out of it? Also, don’t overreact to any news they might provide: “Your first job is to stay cool.” And, he said, be prepared to encourage your doctors to modify standard treatment plans based on what works best for you. For example, he let his care providers know that he was a whiz at adherence so if the best plan they could come up with was complicated, that wasn’t a problem.
And now, seven years later, Lindsay is a speaker and workshop leader — and an inspirational example of the immense power of patient research.
As his fellow panel member, a testicular cancer survivor and activist Dan Duffy, said, “The importance of dogged research is really just astounding. Paternalism is over. It really is about all of us working together, but especially in cases like Doug’s, the patient is not someone to be working on. It is someone to be working with.”
Previously: It’s back! Stanford Medicine X returns to campus
Photo courtesy of Stanford Medicine X