00:00:00:00 - 00:00:27:03
Maegan
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.

00:00:28:23 - 00:00:54:11
Maegan
My name is Maegan Voss, and I have paroxysmal nocturnal hemoglobinuria, or PNH. In the 10 years before I was diagnosed with PNH, I had to see so many doctors, and 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.

00:00:54:14 - 00:01:17:04
Maegan
I was in this limbo for years. The general fatigue is really what hit the most, though, and a lot of doctors didn’t take that seriously at first. The doctor that I finally had diagnose me 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.

00:01:17:19 - 00:01:51:16
Maegan
He said that it was either aplastic anemia, PNH, or another illness, and he said it was very obvious that it was one of the three. And I was just shocked because for so long I hadn’t even heard the term “PNH.” It hadn’t come up at all. 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. A good conversation with the doctor is one where they listen to you and respect your number one symptoms.

00:01:51:23 - 00:02:13:08
Maegan
So 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. My name is Maegan Voss, and I am a member of myPNHteam.