From Fearing To Facing My Rare Disease


If you told me in May 2014 that I would complete a 5k nine months later, I would be shocked. In fact, I would probably think you were crazy. I thought that because I was diagnosed with immune thrombocytopenia, my life was over. There was no hope, only an endless battle with needles and platelet counts. Today I proved myself wrong, and it felt so good!

A candid shot crossing the finish line!

A candid shot crossing the finish line!

I was afraid of life with ITP, it was the elephant in the room. Always thinking about life before becoming sick clouded my mind. At some point I realized it wasn’t going to benefit me to stay on this path. That was around the time my doctors decided prednisone wasn’t going to work, and I took charge of my treatment options. Still, I wouldn’t ever dream of doing a 5k. I had terrible fatigue, I gained 25lbs and I was angry at the world for what my body was doing.

As time continued and I went through chemo, I started to come to terms with what my life with ITP would be. I still wake up every day and obsessively look for petechiae and bruises. I worry over the smallest discoloration on my skin, even if I remember what I bumped into. But I now see that I am ready for the next platelet drop. I am prepared to take Rituxan again. The battles that are coming in the future are not so scary anymore. At this point I see that I am facing ITP head on. No need to fear the disease anymore, just deal with it and keep going.


I signed the “Why I Ride” board today at the end of the race. I am so thankful for a wonderful team of doctors at the Sylvester Cancer Center who have done so much for me.

Our fundraising continues until February 28th. If you are interested in helping the Sylvester Cancer Center continue to study and research new treatments for cancer and rare diseases, click here.