From Pain to Purpose: Doug Lindsay Tells His Story at General Session

By Nikitta Foston

 

The pain was unbearable.

Doug Lindsay was so weak that he could not stand for more than a few minutes. At just 21 years old, the biology major was bedridden and housebound, fighting a debilitating illness that mystified physicians and scientists and soon forced him to drop out of college.

For 11 years, Lindsay was confined to his small apartment. But his mind remained sharp and vigilant despite his physical limitations. He was determined. He believed there was more to his illness than doctors understood. It was a condition that had also plagued his mother and aunt, producing the same level of debilitation.

“When I was a kid, my mother Barbara and my aunt Jeanne were sick. I did all I could for my mom. I was a good caregiver, but beyond that I couldn’t do much. My mom suffered from chronic pain and muscle rigidity. She was too weak to open our front door. My aunt couldn’t tie her shoes in her 30s,” Lindsay wrote on his website, www.lindsaycenter.com

“For years neither could leave the house or take the stairs. The doctors had decades to help them, but after all that time, they still didn’t even know what was wrong,” he added.

From the hospital bed in his living room, Lindsay reached for a medical textbook and began to research possible reasons behind his illness.

He read journals and articles and immersed himself in the latest theories in neurology, endocrinology, and internal medicine.

He visited neurologists and endocrinologists and specialists around the world. Not only did he begin to find answers, he eventually found a cure.

“When I realized the medical system didn’t have a plan for me or my family, I made one for us,” Lindsay wrote.

“I figured out our problems involved the autonomic nervous system and the adrenal glands, and then I figured out what to do about it for each of us.”

Lindsay and another physician finally came up with a diagnosis following a presentation Lindsay gave at a research conference. Dr. H. Cecil Coghlan, a medical professor at the University of Alabama-Birmingham, approached Lindsay and became a collaborator in looking for new treatments, according to an extensive CNN profile.

Coghlan and Lindsay initially suspected an adrenral tumor and performed multiple scans that kept coming back negative. A fourth scan revealed something new, which resulted in a diagnosis of bilateral adrenal medullary hyperplasia.

Lindsay assembled a team of experts and then adapted a surgery that, until Lindsay’s case, had only been performed on animals. As reported by CNN, Lindsay created a 363-page PDF describing how to do the procedure, an adrenal medullectomy. It then took him 18 months to find a surgeon who could perform the procedure.

In September of 2010, Lindsay underwent the procedure at the University of Alabama-Birmingham hospital. According to CNN, Lindsay was able to sit upright for three hours within three weeks of the surgery. By Christmas of that year he was able to walk a mile.

In 2016, Lindsay returned to college to complete his undergraduate studies, earning a bachelor of science in biology from Rockhurst College in Kansas City, MO. He currently lives in St. Louis, MO.

Thanks to Lindsay’s work and collaboration with other researchers, his own health and the quality of life for his mother and his aunt improved. At one point, Lindsay wrote on his website, his mother was only expected to live six months, but he was able to extend that by eight years through his research.

His mother passed away in 2016. His aunt is healthier now, at the age of 71, than she has been since her 20s, in part thanks to an existing medication for which Lindsay and his team found a new use.

Today, he is a highly regarded speaker, lecturer, and motivational leader who counsels small groups, universities, organizations, and executive teams on the principles of perseverance, hope, and leadership.

His inspiring story was the most-read health article on CNN.com for 2019 and it catapulted Lindsay into the role of patient advocate.

Now he is trying to help other rare disease complex condition patients better interact with their doctors and the healthcare system.

“People thought the things I was trying to do were impossible. But I proved them wrong. First I got us answers, and then I got us help,” Lindsay wrote on his website.

“I took the fight to get my family and me better care, better treatment, and better health very personally. If I take your case, I’ll take it personally too.”

The Lindsay Center for Collaborative Care and Innovation is Lindsay’s way of creating a space for individuals to share similar stories, to lead the discussion on innovation, and to help patients lead healthier lives.

“I’ve worked with some of the world’s top doctors and scientists,” Lindsay told AHIMA.

“I learned lessons firsthand from them over years of collaboration, and I also learned what it took for me to be a good partner for them. These lessons inform everything I do today.”

Lindsay is looking forward to bringing his message to AHIMA. “At AHIMA19, I want attendees to understand the role of hope in work, life, and leadership. I want to show them how the same skills they use in their work life can—with only a small shift—be the same skills to help them lead,” he said. “I’ll be attending some of the events at the conference to better understand the role of health information management in healthcare.”

But the message of hope and the tie between serving and leading are essential for the entire industry because they are the necessary components of being trusted enough to effectively lead.”

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