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Sunday, October 01, 2006

When Hemophilia Throws a Curve Ball


This past week I was reminded first how blessed I am to have a son with "only" hemophilia, and second, how important it is to remember our community members who are in the hospital or confined at home. I visited Rich P., a 23-year-old with hemophilia and inhibitors, who is as compassionate as he is passionate, and who is as proactive as he is intelligent and thoughtful. He is a leader with the NHF Youth Commmittee, on at least two patient advisory boards, a full-time college student, and has volunteered on two trips this year to help the poor in Jamiaca and in New Orleans.

Sadly, Rich has been hospitalized for over two weeks, for complications related to his inhibitor. Rich called me the day he was hospitalized, ironically just as I was preparing an infusion for Tommy, also bed-ridden with a psoas bleed. Tommy was better within hours; Rich would be an inpatient for another two weeks. For a guy as active as Rich, being immobilized in the hospital is nothing short of mental torture. When I visited he was surrounded by balloons, cards and stuffed animals and eventually his wonderful friends. As blessed as he is with charisma and a loving family, he was suffering terribly. Yet he still had the kindness to ask about my family and work! Some devoted friends in the hemophilia community have been visiting him, advocating for him, and keeping his spirits high. I was proud to see how our community cares for its own. And I was completely impressed and touched when the VP of a factor manufacturer traveled hours to spend an afternoon with Rich.

Thankfully, many of us will never know that kind of suffering, thanks to advanced treatment. But once in a great while, hemophilia throws us a curve ball. Do you know of someone who is bed-ridden, in the hospital or in pain due to hemophilia? Don't forget them. Send a card, flowers, make a call. You won't believe the difference it will make in their spirits. The attention you show really helps relieve pain, anxiety and loneliness. Bless all of you who care for the sick, suffering and lonely in our community.

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