Sean Powell ran his first race when he was six years old. In 2019, at the age of 44, he was still pursuing the sport, dedicating much of his free time to training for various half marathons.

One day in May, however, he woke up to go to work and felt more tired than usual. Still, he went for his usual evening run, but ultimately cut it short because he felt so worn out. Over the next few days, he began to experience intense leg cramps, was short of breath, and had out of the ordinary heart rate spikes.  These symptoms became more persistent over the next few days.  After a few days, he could only manage running a quarter of a mile before needing to stop.

“Us long distance runners, we know our bodies really, really well. So when the slightest little thing is off, we notice,” Sean said. “I’m a psychotherapist, so at first, I thought it was all in my head; I’d had a stressful year and I had some personal things going on. But when I started breaking the symptoms down, I was like, ‘I think I’m anemic.’”

Sean tried to improve his symptoms by stopping the high dose turmeric he’d been taking to help with knee inflammation, but that didn’t help. His resting pulse rate was also in the 70s, even though his normal heart rate was in the high 40s or low 50s. Within another week, he finally made his way to his primary doctor’s office.

This appointment included some blood tests, which showed that Sean’s hemoglobin was only eight – which is right on the edge of requiring an admittance to the hospital.

“The doctor’s office told me to go to the emergency room. But in my mind, working in medicine as an oncology social worker, you don’t go to the emergency room unless you’re dying or something’s really serious,” he said. “So I waited another week and, after work on June 10, I could barely walk to my car.”

By the time Sean arrived at the ER later that evening, his hemoglobin was down to five and he had a temperature of 103.5°F.

“I’d never seen medical tests go so fast. Within about thirty minutes, I’d had a blood test, a CT scan, a chest x-ray, an EKG, and they were prepping me for my first blood transfusion,” he said. “An oncologist came in the next morning and thought she knew what I had: warm autoimmune hemolytic anemia (wAIHA). We ran a Coombs test and, a few days later, it came back positive.”

Even though Sean finally knew what was causing all of his symptoms, there were still many challenges on the horizon.

“I actually ended up staying in the hospital for two weeks because I was resistant to the steroids. I ended up needing nine blood transfusions. Eventually, I was able to start on rituximab,” he said. “They couldn’t start the treatment earlier because I had to fail the steroids before my insurance company would pay for the next line of therapy. I was finally able to leave the hospital at the end of that week, with a hemoglobin that had rebounded to ten.”

For someone who had dedicated his life to his own health and supporting the health of others, this diagnosis came as a painful surprise.

“Honestly, it blew my world apart. Being healthy was a cornerstone for me. And so this disease removed that safety factor I’d always felt because I was doing everything ‘right,’” he said. “During that hospitalization, I had to face the facts and have frantic but honest hospice conversations with my family about wanting quality of life, not quantity.”

Immediately after getting out of the hospital, Sean began working to get back to his old normal. His care team recommended he take things slow, ease back into his life and his exercise routine, but Sean went back to the gym just a week later.  

“It wasn’t the best thing that I could’ve done for myself. I really should have eased back into things,” he said. “I actually ran my first 10k race five months after diagnosis, but I think pushing myself that hard – to get back to what normal used to be – was really a detriment.”  

As a result of the high dose steroids Sean took throughout these early days, he developed steroid induced tendinitis in his Achilles tendon and, later, was diagnosed with severe osteoarthritis in his hips.

“Thankfully I didn’t have avascular necrosis – which is where the steroids have caused the blood supply to the top of the femur to die, causing destruction of the bone. But I was still only 48 years old and I needed to have both of my hips replaced,” he said. “We had to have a plan in place because, with wAIHA, any invasive procedure can set my immune system back off. Fortunately, I did really well with both procedures last year, and it has given me my life back.”

Today, Sean’s using many of his precious hours to support wAIHA Warriors, a nonprofit dedicated to community building for people living with wAIHA. The organization had its second annual conference earlier this year.

“We had sessions from drug companies and physicians, psychologists, but I most valued the time talking to other people living with wAIHA,” he said. “We were comparing stories and realizing that none of our pathways were at all identical. But still, to me – it felt like somebody finally got it. It was so validating. wAIHA Warriors isn’t a club that I wanted to join, but I’m so glad that I met these people and that they truly understand.”

When he’s not at the in-person meetings, Sean maintains his advocacy on the nonprofit’s Facebook page.

“I know how scary it is at the very beginning. You’re just clawing for any information or answers you can get,” he said. “So I get gratification by answering other peoples’ questions and giving something back. Seeing the relief on somebody’s face, knowing that I’ve addressed some of their fears, that’s something that I didn’t have because this group didn’t exist when I was first diagnosed.”

Sean continues to maintain a practice of long-distance running, and is back to his 10k races, new hips and all. He’s also more cognizant of the ways he presents himself to the world, especially considering the invisibility of his illness.

“We don’t have an instruction book for this. We’re navigating through one of life’s storms and, like every good sailor, we need to constantly reassess where we’re at and what big wave might be coming next,” he said. “My father was diagnosed with colon cancer when he was 29 years old, and he lived with an ostomy for the rest of his life. But my father was never his disease. He was always a man living with this disease. And I’m working to carry on his message: I am not wAIHA, I am someone living with wAIHA.”