While preparing for the CHS’ national ageing retreat in 2018, Learning to learn and passing it on, we recognized that we had an opportunity and an obligation to learn from the participants: to recognize their life experiences with bleeding disorders and to share this knowledge with the larger bleeding disorder community.
Inspired by the amazing work of HIV in My Day, an oral history project based on interviews with people who lived through the first 15 years of the HIV pandemic, we decided to conduct interviews at the retreat with interested participants. And we struck gold. I hope these interviews shed some light on the world of ageing with bleeding disorders. It was an honour to be trusted with these stories.
At the heart of the four interviews was a question about what lessons folks have learned from dealing with their bleeding disorders over the years.
In this video, John and Donna, speak about living with a very rare bleeding disorder and emphasize the importance of staying in charge of your treatment.