Meet Evan. In a recent conversation with the Aplastic Anemia and MDS International Foundation, he shared his journey from paroxysmal nocturnal hemoglobinuria (PNH) diagnosis through treatment and survival.
Evan, please tell us a little about yourself.
I’m 31 years old. I’m based in New York City, and I’ve been living here for around eight years, after graduating from college. I’m working, enjoying life, spending time with friends, and just moving along.
What was your life like before the diagnosis of PNH?
I was biking a lot and extremely active. I had career goals, friends, and was planning on traveling. Pre-PNH, I had a different outlook on what I wanted to do and what goals I wanted to set physically, mentally, and professionally.
What led to the diagnosis?
I went to a Yankees game with my father and my friend. My father is in the medical field; he looked at me and recognized that my coloring looked “off.” I kept biking 20 miles daily while I had a blood test and waited for the results.
When the blood test came back, I found out my hemoglobin was under five! During that week, with more testing, I found out I had PNH. I’m extremely lucky to have found out in that short period of time.
It was a very scary time, and a lot of things were happening at once. I found out I had two blood clots in and above my leg, and I thought it was just an injury from biking or exercise.
When you get diagnosed with any disease that is extremely serious or rare, it’s a lot of information at once. You’re stressed about dealing with the diagnosis, let alone processing everything that’s going on and being able to do research.
Even though the medical team gave me information about PNH, I learned more when I got connected with someone else in the community. I was able to talk to him in detail about PNH, what it was, what I can and can’t do, how he’s surviving, and how he’s living his life currently.
Since you’ve been on treatment, how has life changed?
For me, it’s the little things. I prioritize resting and relaxing because I have weddings, bachelor parties, and work events. I’m balancing my energy to go to those and managing everyone’s expectations.
I still have the same ambitions and goals that I had before PNH, but it’s just going to take longer to do them all. Accepting that was the hardest thing,
