Oral Histories

ORAL HISTORIES

 

Kay DePerno details her life as a woman with a bleeding disorder. Kay did not receive an accurate diagnosis until fifty-seven years after her first bleed. Hear how increased awareness of women with bleeding disorders has impacted her life.

Clip 2 (1:35)

Clip 3 (0:49)

 

Felix Louis Garcia was born with hemophilia B. During childhood, he was often bullied in school, but found a sense of freedom in his family’s acceptance of his condition. Felix, like thousands of others during the 1970s and 1980s, contracted HIV and Hepatitis C through clotting factor concentrates. Listen to his story of resilience.

Clip 2 (8:18)

[01:09:49.08]- [01:11:48.01]

 

Kevin, Sara, Connie, Pete, and Susan remember the golden era of the 1970s, when new treatments promised increased freedom and improved health for people with hemophilia. Unfortunately, progress can bring unintended consequences. The Goedken family lost eight people in ten years to HIV/AIDS and continue to use their experience to inspire others to remain vigilant.

Clip 2 (9:18)

 

Steve Goedken lost six of his brothers to HIV/AIDS during the 1980’s and 1990’s. In this interview, he talks about his early life and family dynamics in an era of immense change for people with hemophilia. Though it was once a highly stigmatized condition, people like Steve and his brother Loras have helped to raise awareness and dispel the shame surrounding HIV/AIDS.

Clip 2 (1:13)

Clip 3 (1:34)

Clip 4 (7:46)

 

Selina comes from a family with multiple generations of people with bleeding disorders. Her early life was shaped by being a child of someone with a bleeding disorder, but she did not receive a diagnosis until age thirty-six. As a parent of and advocate for people with bleeding disorders, Selina stresses the importance of community connections and speaking truth to power.

Clip 2 (5:14)

Clip 3 (1:11)

 

Judy and her daughter Tylia lost eight members of their family to HIV/AIDS during the 1980’s and 1990’s. Despite this traumatic chapter of their lives, they define themselves by their compassion and resilience. Hear how the HIV/AIDS crisis impacted multiple generations within families and is remembered in the present day.

Clip 2 (7:02)

Clip 3 (1:26)

 

In her lifetime, Kimberly has faced the challenge of being recognized as a woman with hemophilia. Here, she shares her experience growing up with hemophilia, and how finding her family means sharing more than DNA.

Clip 2 (3:06)

Clip 3 (1:53)