A Childhood Impacted by wAIHA

By Dave, wAIHA Warrior

dave waiha blog

While warm autoimmune hemolytic anemia (wAIHA) is more common in adults, the condition doesn’t discriminate against children, as Dave, who lives with wAIHA shares.

“I was diagnosed with wAIHA as a child. Initially, my doctor said I’d be in the hospital for two to three days. I ended up missing the last two years of grade school because of it.”

A wAIHA diagnosis is life-changing at any age, however, Dave recounts the impact it had on him during his formative years, as well as how it’s affected him into adulthood. Keep reading to learn more about Dave’s experiences and his hope for continued research.

How did wAIHA impact your childhood?

wAIHA definitely affected my social life when I was first diagnosed. Because I was in and out of the hospital so much after my diagnosis, my actual last full year of grade school was grade six. I wasn’t fully back at school until grade nine. That made things a little socially awkward. I was going to a new school, trying to meet new friends, and there was a social immaturity there because I hadn’t been socializing with my peers for the last two years. There was a learning curve in making those friendships.

What impact has it had on your employment?

When you have active anemia, you’ve got to take time off work to get better and allow your body to heal. The only treatment I can get right now is a steroid, and it affects my mood, my diet; there are a lot of side effects that make it challenging to work. The last time I was ill, I had to take two weeks off, which was significant.

What’s the most challenging aspect of living with wAIHA?

I don’t have a root cause diagnosis, so I don’t know how that will affect me as I get older. I don’t know what will trigger it, and it’s always in the back of my head. Recently, I was in bed with a headache all day, and I was wondering if I should get a blood test. You just don’t know, so you end up brushing it off. The last time I got ill, somebody at work went on vacation and came back and blatantly said, “you look jaundiced,” and that’s when it really hit me that I was probably sick again.

What does wAIHA research mean to you?

It means hope. It’s a relief to know there are people who are focused on it, and they’re working towards creating better options for people like me who are ill or might fall ill. I’m lucky I’ve been in remission for a long time, but that’s not the case for everyone.

Do you think it’s important for wAIHA patients to participate in research?

Yes. By making yourself available and participating in research, you could help make life better for yourself and others suffering through this. It’s a scary disease, and people don’t realize its impact. The more information we have and the more we participate in studies, the more likely it is we can help people living with wAIHA.

Learn More About Dave’s wAIHA Journey

Are You Living with wAIHA?

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

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