Events in the Hemophilia Community

08/20/19 • 23 min

Guest host Matt sits down with Jill, a caregiver, and Paul and Shelby, who have hemophilia B, to talk about events in the hemophilia community. Recorded on site at The Coalition for Hemophilia B Symposium, the group discusses how their involvement in the community has evolved over the years and what they would recommend for new families who are looking to get involved at local and national events.

Previous Episode

Using Music as a Creative Outlet

Our usual host, Becky, passes the mic to her daughter Elizabeth, a person with severe hemophilia, to guest host this episode. Elizabeth, who is studying to be a music therapist, chats with Spencer, a musician and teacher who also has severe hemophilia, about how music can make a difference in the lives of people with hemophilia. The pair talk about using music as a creative outlet, how playing instruments impacts them physically, and what they would recommend to help someone connect to music.

Next Episode

Pain, Depression, and Hemophilia

Pfizer employee Dr. Terry Anderson stops by to talk about her research in hemophilia around pain and depression, and shares some of the findings in the recent studies to which she contributed. Becky and Dr. Anderson discuss the perception and management of pain and the role of caregivers in supporting people with hemophilia.