Skip to contents
In This Issue:
Last month, 16 men with hemophilia gathered with their families and care providers to celebrate the completion of the oral history project “The Gift of Experience” and the publishing of a book by the same name that emerged from the project.
The book is comprised of their first-person accounts of living with hemophilia, HIV and hepatitis C.
Because the country’s blood supply was unsafe prior to 1985, people suffering from hemophilia—a disease that causes excessive bleeding and is mostly found in men—received regular infusions of contaminated blood. Many hemophilia patients who survived now live with HIV and hepatitis C.
“What they have to say is not only critical for kids and families growing up with hemophilia today, but also for researchers who study the disease and want to better understand the effect it has on people’s lives,” said Laura Gray, LICSW, of the Boston Hemophilia Center, which is located at BWH and shared with Children’s Hospital. Gray, who conducted the interviews along with Christine Chamberlain, wanted the stories of the center’s patients to be told. Their accounts address the psychological, political, economic, medical and social challenges of living with the disease.
The original documents are available at The Center for the History of Medicine at Harvard’s Countway Library. The interview recordings and transcripts will soon be accessible on Countway’s Web site.