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.
Help ASH Build an Inclusive Hematology Community!
ASH is committed to building and nurturing a global hematology community and workforce inclusive of diverse perspectives, talents, and experiences as it works toward one collective goal: helping hematologists conquer blood diseases worldwide.
How Can You Help?
Visit your My Account page, make needed updates to your demographic details, and select your preferred level of ASH access to your information; aggregated or individually identifiable, or choose not to provide or share your information. By sharing information about who you are, you will help ASH have a better appreciation of the diverse needs and talents present in the field, and help to build a more inclusive, collaborative hematology community. It will take only a few moments to complete!
Update Access to Demographic Information Learn About Our Mission