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Hemophilia: A Patient Perspective

This personal story by Robert Massie is an excerpt from The Gift of Experience, a collection of oral histories. The story was re-published in December 2008 as part of the special ASH anniversary brochure, 50 Years in Hematology: Research That Revolutionized Patient Care.

When I was twelve, two things happened that had an extraordinary impact. One was that, in 1968, I was taught to self-infuse. I still remember the nurse who taught me … she also taught my father how to infuse, so sometimes my father would do it; sometimes I would do it under his supervision. Gradually, I gained the ability.

Secondly, the factor VIII concentrates began to appear. These made an enormous difference because not only were they much more powerful, but the key piece there for me was that the concentrates could be kept cool rather than frozen. That opened up an absolutely enormous vista for me to do things on my own, because I could take my bottles of factor with me.

Eventually they learned that factor could be kept at room temperature … I could quite literally pack a backpack and go. I was able to give myself shots on camping trips or in the bathroom of an airborne 747.

Just at the moment of adolescence, when your life is expanding anyway, my ability to manage hemophilia improved in a way that allowed me this freedom.