Personal stories about having clotting factor replacement therapy

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Personal stories about having clotting factor replacement therapy

These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.

Alex, age 19: I am a pretty active guy. I love to go on bike rides, play with my dog, and hike. I don't want to have to give up the things I enjoy because of bleeding risk. I decided to try regularly scheduled therapy, even though it is sort of a hassle. Being able to maintain my lifestyle is worth the inconvenience of scheduling the infusions and uncertainty about whether supplies are available.

Gene, age 51: I've learned to adapt my lifestyle so bleeding episodes are more predictable. Plus, now that I'm a little older, I've slowed down a little. I miss some of my usual activities, but don't want to have to deal with regularly scheduled therapy. I also don't want to figure out the insurance and all that goes with that. I have enough on my mind than to go through all the complications that go with regularly scheduled therapy. I'm going with on-demand therapy.

James, age 33: I tend to worry a lot, and with hemophilia—well, you never know when a bleeding episode is going to happen. I have a pretty moderate routine. I walk a little bit and swim every now and again. But I just never know what will trigger bleeding. I decided to try regularly scheduled therapy so I would be able to relax more. My wife and I talked a lot about it and decided the expense was manageable and that we would lead happier lives knowing that we were doing all we could to control my bleeding.

Sam, age 37: I hate shots! And getting clotting factor replacement therapy is like one, long, drawn-out shot. Having regularly scheduled therapy three times a week is just too much for me. I would rather be extra careful and take precautions to prevent bleeding episodes as best as I can rather than have the frequent infusions. Plus, it is cheaper. For me, the decision to have available on-demand therapy was easy.

Credits

Last updated:	August 20, 2007
Author:	Robin Parks, MS
Reviewed By:	Anne C. Poinier, MD - Internal Medicine, Brian Leber, MDCM, FRCPC - Hematology
Editors:	Kathleen M. Ariss, MS, Pat Truman, MATC