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Today on Beyond the Bleeds is part 2 of our “Reflections on Hemophilia’s Bad Blood Era” with Peggy Maier and Audrey Nuskiewicz, foundational Hemophilia Outreach Center (HOC) nurses. We delve into the challenges faced by the hemophilia community during this period, the impact of HIV/AIDS, and the resilience and hope that emerged in the face of adversity. Peggy and Audrey share their experiences as caregivers, advocates, and pillars of support for patients and families navigating uncharted territory.
Peggy Maier & Audrey Nuskiewicz are pioneering nurses who have dedicated their careers to serving the hemophilia community. With their unwavering commitment, compassion, and expertise, they have been instrumental in shaping comprehensive care for individuals with bleeding disorders. Their firsthand accounts of the “bad blood era” offer a unique perspective on a defining moment in hemophilia history and the enduring legacy of those who fought for better treatment and brighter futures.
“It took Magic Johnson, Arthur Ashe, to someone who’s famous to make it okay that
you got it a different way.” – Peggy Maier
Today on Beyond the Bleeds:
- Peggy and Audrey remained strong and positive for their patients during the “bad blood era,” refusing to give up hope despite the challenges.
- The hemophilia community faced discrimination and stigma due to the association of HIV/AIDS with the condition.
- Comprehensive care and early treatment significantly impacted the quality of life for individuals with hemophilia.
- The “bad blood era” led to improvements in product safety, such as donor screening, heat treatment, and the development of recombinant factors.
- Patients and families affected by HIV/AIDS during this time often experienced survivor’s guilt and emotional trauma.
- Peggy and Audrey’s dedication and advocacy were crucial in supporting patients and families through the crisis.
- The resilience and spirit of the hemophilia community shone through, with individuals refusing to let their diagnoses define them or limit their potential.
- Today’s progress and advancements in hemophilia care are a testament to the hard work and sacrifice of those who came before.
Resources Mentioned:
Bad Blood Documentary (Amazon Prime)
Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder?
Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.
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Ready for a weekend of connection, education, and fun?
Join the Great Lakes Hemophilia Foundation’s Wisconsin Bleeding Disorders Conference from June 6-8 at the Kalahari Resort in Wisconsin Dells!
This event is packed with expert-led sessions covering mental health, aging with bleeding disorders, nutrition, advocacy, and cutting-edge treatments. Plus, there’s something for the whole family—peer-to-peer discussions, youth programs (ages 7-13), and childcare services (ages 4-6).
Registration includes two nights at the Kalahari Resort, meals, and full access to the resort’s incredible waterpark. Don’t miss out—register by May 1!
Visit glhf.org today to secure your spot and find out about available financial assistance.
We can’t wait to see you there!
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