Maegan Voss spent years going to doctors because of debilitating fatigue and infections. But it took a decade before they were diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare form of anemia.

“I had to get so used to communicating my symptoms and advocating for myself and kind of being the number one backer of myself. I knew something was wrong, and I trusted my body,” Maegan said.

In Limbo for Years

Maegan — who prefers the pronouns they/them — had a rough 10 years prior to their diagnosis. “During the time that I was undiagnosed, I was probably being hospitalized once every few months. Compared to my peers, I would go out and I would have to sit down after like 10 minutes. I couldn’t wait in line. I couldn’t dance the way that I used to or have the energy to go on hikes. And I also kept getting repeated infections, which then would lead to my hemoglobin and platelets dropping,” they shared.

“During the time that I was undiagnosed, I was probably being hospitalized once every few months.”

— Maegan, a myPNHteam member

The frustration of ongoing symptoms and terrible fatigue was compounded by doctors who either didn’t know what was wrong with Maegan or didn’t think their fatigue was a serious problem. “I was in this limbo for years,” they said. “The general fatigue is really what hit the most, though, and a lot of doctors didn’t take that seriously at first.”

Finally a PNH Diagnosis

It took time, but eventually Maegan found a doctor who saw how significant their symptoms were. “When he looked at my labs — and actually took the time to listen and understand that fatigue was my number one symptom, and that I also was having this pain in my chest — he said that it was either aplastic anemia, PNH, or another illness,” they recalled.

Because the disease is so rare, and symptoms may resemble other conditions, PNH can be hard to diagnose or may be misdiagnosed.

Despite seeing many doctors over the years, Maegan had never heard any mention of paroxysmal nocturnal hemoglobinuria. “I was just shocked because for so long I hadn’t even heard the term PNH. It hadn’t come up at all,” Maegan said. Because the disease is so rare, and symptoms may resemble other conditions, PNH can be hard to diagnose or may be misdiagnosed.

Find a Doctor Who Listens

Having an accurate diagnosis of PNH allowed Maegan to get the treatment they needed. “I was finally able to get a diagnosis after 10 years and start medication, which has been a huge help, and it’s been really amazing.”

Something they learned along the way to a diagnosis is that strong communication with your doctor is essential. If a doctor isn’t listening to what you’re saying about your symptoms, they may not be the right doctor for you. “A good conversation with the doctor is one where they listen to you and respect your number one symptom,” Maegan advised.

If a doctor isn’t listening to what you’re saying about your symptoms, they may not be the right doctor for you.

But Maegan also believes a big part of the communication process with a doctor relies on being open with your doctor and explaining exactly how you feel. “It might have just been really lucky to get a doctor who knew his stuff. But I also think that it took me kind of being that missing puzzle piece of information — and coming with my lived experiences — to really bring out the diagnosis.”

Talk With Others Who Understand

On myPNHteam, the social network for people with paroxysmal nocturnal hemoglobinuria and their loved ones, hundreds of members come together to ask questions, give advice, and share their stories with others who understand life with PNH.

Did you have a hard time getting your PNH diagnosis? What was your diagnostic journey like? Share your experience in the comments below, or start a conversation by posting on your Activities page.