Living with wAIHA

By Sean, wAIHA Warrior

sean waiha blog

Warm autoimmune hemolytic anemia, or wAIHA, is a rare blood condition that impacts about 45,000 people in the U.S. While it doesn’t affect a large population, there’s no denying its significance in those who live with it, as ENERGY study participant Sean shares.

“I went from one day being a completely healthy 45-year-old male to somebody who could barely get up and make dinner or get to work. I could do anything, and suddenly, out of the blue, this autoimmune condition hit me.”

Rare diseases rarely make sense, adding to the fear and frustration so many rare patients experience, as Sean knows too well. Keep reading to learn about Sean’s wAIHA journey, the obstacles he’s faced, and his hopes for the future.

When did you notice something was off?

I had gone to work, come home, gone for a run, and noticed something wasn’t right. Halfway through my run, I was out of breath, which was very unusual. I’m a runner and had recently competed in a race and placed third, so I was in pretty good shape. I just thought I was tired that day. I went on with my life as usual, but I found that over the next week, I was getting progressively more tired. A couple of weeks and multiple tests later, I received my wAIHA diagnosis.

Outside of exhaustion, what other symptoms did you experience in active wAIHA?

I’m currently in remission, but when my wAIHA was active, I had shortness of breath and an increased heart rate. My heart was beating so fast it couldn’t pump all the blood from my legs, so I developed severe swelling in my feet and ankles. I also developed a condition called rigors, where I would have severe fevers and shake uncontrollably. My hemoglobin was so low that I developed pallor and looked like a ghost. I didn’t have enough red blood cells, so I was freezing. Driving to work, I would turn the seat heaters on even though it was almost summer here in Florida. The worst symptom of all was the fatigue.

How did living with active wAIHA impact your daily life?

Severely. I couldn’t participate in the social activities I usually enjoyed. I’m an active person and have a lot of friends, so usually, after work, I’m in the gym, out for a run, or meeting someone for dinner. Instead, I was having to come straight home and lie down.

I have a very stressful job as a hospital administrator, and I couldn’t keep up with my work. I didn’t have enough red blood cells getting to my brain, so I had brain fog and couldn’t concentrate or think clearly. My life had turned upside down.

What impact did your diagnosis have on your friends and family?

For my family, it was extremely terrifying that someone who had been so healthy was now in the hospital getting blood transfusions and chemotherapy. We didn’t know if I would make it through. Interestingly, it made my family and friends reflect on their own health and realize how vulnerable we all are.

Although you’re in remission, are you still impacted by wAIHA?

I was very fortunate to go into remission the year after I was diagnosed, however, there was still a fear of the unknown. I had been a completely healthy adult, and this disease came out of nowhere. Shortly after going into remission, I became hyper-vigilant about the symptoms. If I felt like I had a fever or was short of breath at the gym, I feared it was coming back.

Now, after three-plus years of living with it, I’m nowhere near as anxious and hypervigilant, but I continue to wonder if it will come back and what will it look like when it does?

What are your hopes for the future of wAIHA research?

Very little is known about this disease. In my case, it was idiopathic, meaning my doctors have no idea why I suddenly started producing antibodies that destroyed my blood. When I was diagnosed in the hospital, I couldn’t get my hands on enough information. We need research so doctors can generate more information and potentially develop effective treatments.

Learn More About Sean’s wAIHA Journey

Are You Living with wAIHA?

If your story is similar to Sean’s, you may be eligible to participate in wAIHA research. Learn more about the ENERGY Study clinical trial eligibility criteria.

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