Lessons I Have Learned

By:Corey Parker - Person with Hemophilia and V.P. of the HFSC Board of Directors

It was 1992, I was 21 years old and had just been drafted by the Detroit Tigers to play minor league baseball. I was sent to Niagara Falls, NY, with some of the best players from around the country and was determined to show them that I was strong, that I belonged there, and that my Hemophilia was not going to hold me back. Two weeks into the season I was up to bat and was nailed by a fastball in my right elbow. It started to swell immediately. The team trainer came over to see if I was all right and I told him that I was fine and just needed some ice. I didn’t know how to self-infuse, and I surely wasn’t going to go to the hospital just because I had been hit by a ball. I was determined to treat my injuries like all the other players did. I was sure that after a night of icing and praying, my elbow would be okay. I was wrong - I woke up in the morning with my elbow the size of a small watermelon.

I had waited too long to treat my injury, and now had to deal with all the bleeding into my elbow before there was any permanent damage. Fortunately, I knew that physical therapy was my best plan of attack. My physical therapist had recommended that I treat with factor before each therapy session to assure that I would not complicate things and cause more bleeding. We would work together to work the fluid out of the joint and then slowly increase my range of motion until it was back to normal. Finally, we would work to strengthen the joint to help prevent more bleeds in the future.

I continued in baseball and played six years in the minor leagues. Unfortunately, I never finished a season without being out for at least a month with a minor bleed that had turned into a major one because I hadn’t treated it early enough. Years later, after my baseball career had come to an end, I realized that the way that I dealt with my bleeding disorder was holding me back, not the fact that I had Hemophilia. It took me a long time to accept the fact that I am different than the other players because of my bleeding condition and, as a result, I need to take better care of myself.

My involvement in sports and the Hemophilia community have worked together to improve the quality of my life. My parents were always very supportive of me and my brothers, but as an adult with mild Hemophilia (Factor VIII), I have come to realize the benefits of being involved with the bleeding disorders community. As I have listened to others share their experiences, I have learned a lot about how to better manage my condition. Building relationships with others in the Hemophilia community has helped me tremendously.

One example of this was when I went to Hemophilia camp for the first time as a volunteer at the age of 26. I remember watching two 9-year old boys with severe Hemophilia playing catch in front of the recreation room when one of the boys fell on his knee. He picked himself up, wiped the tears from his eyes, went to the infirmary to infuse himself, and, within a matter of minutes, was right back outside playing catch again. I couldn’t believe that this 9-year old with severe Hemophilia had more control over his bleeding disorder than I did.

That was when I realized what an important role the foundation plays in the Hemophilia community. It provides an avenue where families can get together and learn from each other, and summer camp is a great place for kids to take ownership of their Hemophilia and learn to take care of themselves. If I had taken advantage of some of the great programs the foundation had when I was young, I might have learned how to infuse and taken a more aggressive approach when dealing with my injuries.

Becoming involved in the Hemophilia community has helped me to educate myself and given me a much better understanding of how to take care of my bleeding disorder. But the best part of my involvement is great friends I’ve gained. I have never been around a group of people who care so much for each other. It’s as if there is a special connection based on our similar experiences, and we are able to talk about anything with one another.

My father had a quote pinned to the wall when I was young that read… “I used to complain that I had no shoes, until I met a man who had no feet.” I don’t know where the saying came from, and I’m not sure why it stayed with me, but I do know that it helped me to accept what I have and to make the most of my life. I believe our community is full of people who have done the same.