B's in a Pod

Host Becky talks with Melissa, the mother of a son with hemophilia B, about how to optimize time spent during an HTC visit. Melissa details the different specialists who are often available for consultation, how her son's visits are structured, and how she participates with his care team. Melissa also talks about mentally preparing for a long day of appointments at the HTC.

Host Becky talks with Matt, the father of a son with hemophilia B, about his family's experiences with the emergency room. Matt talks about the importance of being prepared to deal with unexpected emergencies and gives insight on what has helped his family to have more successful ER visits. Becky and Matt also discuss traveling as it relates to hemophilia and what they do to prepare in the event of out-of-town hospital visits.

Host Becky talks with Melissa; both women have a child with hemophilia, and in this episode they share their experiences. They talk about some of their most important lessons from having raised children with hemophilia and how they learned to help advocate for, and teach advocacy to, their kids.

Host Becky talks with Matt and Melissa, both of whom have a son with hemophilia B who has learned to self-infuse. The trio talk about their experiences teaching self-infusion, how camp can play a part in that, and what it means to transition control to their children when their children begin to care for hemophilia on their own.

Host Becky talks with Paul, a person with hemophilia B, and Matt, who has a son with hemophilia B, about sharing a hemophilia diagnosis with new people at school, in social situations, in professional settings, and more. They talk about ways they have found success in discussing hemophilia with others.

Host Becky talks with Paul, a person with hemophilia B, about what it was like growing up with his brother, who does not have hemophilia, and his two sisters, who are symptomatic carriers. Paul chats about how his parents helped manage hemophilia as part of their family and worked to keep balance in their lives. He also reflects on how hemophilia B impacted his relationships with his siblings, ultimately helping to shape him as a parent.

Host Becky chats with Wayne and Paul, members of the hemophilia B community, about the different advocacy groups in existence and how they can help people and families with hemophilia B. They discuss the benefits of keeping current with patient organizations and how to tap into valuable resources. The trio also recounts how each got involved in patient advocacy and what they enjoy most about being active participants in the patient community.