Living with PNH: Ashley’s Story

TRANSCRIPT: 

Ashley: [I’ve] Pretty much grown up in Saint Augustine. I am married, I have a three-year old son, love cars. I think when I got diagnosed, I never thought we would be here today. I really had no idea that anything was going on. I was always tired. We were busy – I just figured I was tired.

I had some kind of mild symptoms. I actually had a miscarriage, and that's how I ended up getting diagnosed with the PNH. That was five years ago. I needed blood transfusions every three weeks because I felt really bad at that point. You know, we just try to live in the moment. When you have something this rare, you have to kind of be your own advocate. You have to do your own research. You really have to know what's going on. 

Gina: I didn't realize the strength that she had within her. And I'm so proud of her strength and her grace with all of the challenges that she faces.

Ashley: With PNH, it kind of changes your outlook on life. We just go with the flow and, you know, [are] happy. So many people don't have that outlook on life, so that's definitely a silver lining. I think that's the biggest change, as far as the way I feel every day. I really try not to let little stuff bother me anymore.