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Today on Beyond the Bleeds, John and Heather welcome Andrea Buxton and Erica Brock to explore the critical process of transitioning healthcare for patients with bleeding disorders. Our conversation dives into the stages of transition from pediatric to adult care, community support, and the programs available to ease this process. The discussion emphasizes the challenges patients and their caregivers face and the importance of education in managing chronic conditions.
“Transition is not just about moving from one doctor to another; it’s about learning to manage
your own healthcare needs.” – Andrea Buxton
Today on Beyond the Bleeds:
- Transitioning in healthcare involves shifting from pediatric to adult care and independently managing a bleeding disorder.
- Formal transition programs, like Minnesota Treatment Center’s transition day, are crucial in ensuring seamless care.
- The National Hemophilia Program Coordinating Center (NHPCC) aids treatment centers in developing consistent and supportive transition programs.
- Support from parents and caregivers is pivotal, gradually allowing young patients to take on more healthcare responsibilities.
- Quality Improvement (QI) projects include surveying parents to alleviate their anxieties about transitioning responsibilities to their children.
- Integrated primary care within hemophilia centers aims to streamline patient visits and minimize time off work or school.
- A comprehensive booklet and interactive materials help patients understand and manage their bleeding disorders effectively.
- Flexibility in the program accommodates patients’ varying developmental stages, ensuring a tailored approach to transitioning.
Resources Mentioned:
Hemophilia Outreach Center (HOC)
National Hemophilia Program Coordinating Center (NHPCC)
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!
