Fighting PNH While Helping PNH Patients

I’m 31-years-old, and I was diagnosed with PNH in 2009 when I was 24.

I am generally athletic, and in college I was a wrestler. I knew what I could expect when training, competing, and recovering from competition. I transitioned from wresting to mixed martial arts (MMA) in 2008. Naturally, when I started that, I wanted to be sure that my training and recovery were the best they could be.

I was 9-0 as a Professional in MMA and had my tenth fight in July 2009.  About halfway through training for this fight, I started feeling really sluggish and tired. My body wasn’t recovering in the usual way, and I had back pain and abdominal pain that went on longer than it should have. I didn’t think too much of it at first, but still trained hard, made the weight, competed and eventually won the fight. I wasn’t recovering like before and thought it was something I was doing wrong – maybe somehow not training hard enough.

I went to my general doctor, who found my blood counts to be all out of whack and then I was sent right to a hematologist in Kearney, NE. She ran some tests including a flow cytometry test for PNH, which was sent to the Mayo clinic for evaluation. It came back positive. This hematologist knew I needed to find an expert and helped me find one. She also knew I had to learn everything I could about my condition.

Even though I was still in something of a denial phase, I did my research and found AAMDSIF and the PNH Foundation. And I found an expert -- after the first consultation, I knew I was facing something significant and could no longer be in denial, It was reassuring to find an expert.

Right away, my hematologist knew of the clotting risk with PNH, so I was put on Warfarin, a blood thinner. I went back to my specialist and this wasn’t long after eculizumab (Soliris®) had been approved. I got my first infusion in March 24, 2010 and have been on it ever since. I have a significant PNH clone, but the drug is working well. So it’s under control for the most part – at least my team of doctors think so.

So it was ok for me to go back to MMA and start competing again -- I was away from it for about a year. My platelet count had not been that bad… it was the hemolysis, resulting fatigue that had been the problem.

For people who have recently learned they have PNH – I encourage them to try and do what I did. Get a specialist, and learn to be your own best advocate and speak up when you need something. Don’t let this medical challenge completely take over your life – things are going to be different, but still try to live in the most normal way you can. Everyone experiences adversity – so even with what you are going through, try to be a source of support for others, no matter what their challenges are. I think some of what I learned as a wrestling team captain and later as an assistant coach helped developed some of the personal skills I am using to live with PNH. As a team, we had upsets and defeats that were hard to face, but you dealt with them and lived to fight and compete another day. I used these same attitudes to deal with PNH.