Beyond the Bleeds

By Hemophilia Outreach CenterMedicine Health & Fitness

Beyond the Bleeds episodes

March 31, 2025Hemophilia Journey from Newborn Challenges to Care Coordination with Erin Wegner
Today, on Beyond the Bleeds, we share the experiences of Erin Wegner, a mother who navigates life with two sons diagnosed with hemophilia. Alongside Angie Farrar, lead nurse coordinator at the Wausau Hemophilia Outreach Center, Erin discusses the challenges and learning curves of her unexpected journey into the world of bleeding disorders, emphasizing the importance of specialized care and community support.
Erin Wegner is a mother of two boys, Levi and Everett, both diagnosed with hemophilia. With no previous family history, Erin was thrust into the bleeding disorders community after a challenging situation arose shortly after Levi’s birth. From Nebraska to Wisconsin, Erin’s story is about adapting to the unexpected and creating a support network for families facing similar situations.
“When Levi was born, everything was fine until he was circumcised, and he wouldn’t stop bleeding. That’s when we realized something was wrong.” ~Erin Wegner
Today on Beyond the Bleeds:
When Levi was born, a routine circumcision revealed his severe hemophilia, sending Erin and her family on an urgent medical quest.
Erin’s husband, Josh, played a crucial role in advocating for further investigation, preventing a premature discharge from the hospital.
Angie Farrar highlights the critical role of the Hemophilia Outreach Center in coordinating medical care and providing educational resources.
The Wegner family moved from Nebraska to Wisconsin because they needed closer access to medical facilities and specialized care.
With Everett’s birth, Erin experienced a more coordinated approach, backed by genetic testing and a clear birth plan.
As a lead nurse coordinator, Angie Farrar ensured seamless communication and preparations between healthcare providers for Erin’s deliveries.
Community support through the Wausau Hemophilia Outreach Center gave Erin access to essential networks and resources.
Erin now serves as a patient liaison, supporting families and advocating for awareness in the bleeding disorders community.
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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post Hemophilia Journey from Newborn Challenges to Care Coordination with Erin Wegner appeared first on Hemophilia Outreach Center.
35 min
March 17, 2025Reflecting on Hemophilia’s Bad Blood Era with Peggy Maier & Audrey Nuskiewicz Part II
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 thatyou 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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post Reflecting on Hemophilia’s Bad Blood Era with Peggy Maier & Audrey Nuskiewicz Part II appeared first on Hemophilia Outreach Center.
24 min
March 03, 2025Reflecting on Hemophilia’s Bad Blood Era with Peggy Maier & Audrey Nuskiewicz Part I
Today on Beyond the Bleeds, we’re thrilled to have Peggy Maier and Audrey Nuskiewicz sharing their poignant memories and impactful experiences during the Bad Blood Era. This challenging period in the bleeding disorders community saw contaminated blood products spread diseases like HIV and Hepatitis C. Peggy and Audrey delved deeply into their firsthand experiences as nurses, supporting their patients and community with unwavering dedication and care during these tumultuous times.
Peggy Maier and Audrey Nuskiewicz are pioneering nurses who played crucial roles at the Hemophilia Outreach Center. With a deep commitment to their patients, they navigated the complex challenges of working during the era when blood products were not fully understood in terms of transmission risks for HIV and hepatitis C. Their compassionate approach and advocacy have left a lasting impact on the field and countless lives.
“It wore you out. It really wore you out. But we felt we had to be there to support them because they had become very close. They had become family.” – Audrey Nuskiewicz
Today on Beyond the Bleeds:
The Bad Blood Era significantly impacted the local community, affecting up to 80% of the severe population in Green Bay.
Nurses Peggy and Audrey played pivotal roles, emotionally and physically supporting patients and their families during this turbulent time.
Early involvement in the Hemophilia Outreach Center led to today’s comprehensive patient care model.
The introduction of recombinant factor treatment has dramatically increased product safety.
Patients built meaningful relationships with healthcare providers, creating a strong support system.
Education and advocacy were crucial; nurses provided critical information to help patients make informed decisions about their treatment.
Emotional support extended beyond clinical care, emphasizing the psychological well-being of patients.
Despite advancements in treatments, the need for ongoing education and awareness of the Bad Blood Era’s history remains vital.
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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post Reflecting on Hemophilia’s Bad Blood Era with Peggy Maier & Audrey Nuskiewicz Part I appeared first on Hemophilia Outreach Center.
33 min
February 17, 2025Growth & Community Outreach at Wausau’s Hemophilia Center with Angie Farrar
Welcome to Beyond the Bleeds. Today, we sit down with Angie Farrar, lead nurse coordinator at the Hemophilia Outreach Center’s Wausau location, to discuss the center’s vital role in improving bleeding disorder care in central Wisconsin. We delve into the challenges patients face in rural areas and the significant strides made in education and outreach to better serve individuals with bleeding disorders.
Angie Farrar brings over 15 years of nursing experience to her role at the Hemophilia Outreach Center. With a background in surgery and outpatient care, Angie joined HOC seeking more family time while continuing to serve patients. Her dedication has been instrumental in growing the patient base in Wausau and enhancing the center’s outreach programs within the community.
“We’ve definitely changed the way people with bleeding disorders are being treatedin central Wisconsin.” – Angie Farrar
Today on Beyond the Bleeds:
Hemophilia Outreach Center expanded to Wausau in March 2022, significantly reducing drive times for central Wisconsin patients.
Angie’s experience in surgery and outpatient care led her to join HOC, and she was attracted by its comprehensive patient services.
The Wausau center has grown from 10 to nearly 50 patients in two years, marking substantial progress in outreach and care accessibility.
Education is a key focus, with emergency medical staff and nursing students receiving targeted training on bleeding disorders.
Collaborative efforts with local EMS have improved emergency response and patient information management for bleeding disorder incidents.
Wausau provides comprehensive care, including phlebotomy, infusions, and access to ancillary services like physical therapy during clinic days.
Patients can self-refer to the clinic, simplifying the discovery and diagnosis process for potential bleeding disorders.
As a 340B entity, HOC can provide patients with free initial labs, reducing financial barriers to diagnosis and treatment.
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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post Growth & Community Outreach at Wausau’s Hemophilia Center with Angie Farrar appeared first on Hemophilia Outreach Center.
21 min
February 03, 2025Healthcare Independence and Transition Challenges with Heather & John
On Beyond the Bleeds, John and Heather take a different approach today by becoming both the host and the guest, diving deep into life transitions in healthcare. Previously, they’ve discussed the Hemophilia Outreach Center’s support systems, but today, they broaden the scope to explore how transitions affect all aspects of life. These multifaceted and universal transitions are covered from childhood to adulthood, navigating work environments, or even preparing for retirement.
Heather Hansen and John Mazzariello both have three children and bring a personal touch to the healthcare transition discussion. They pull from their experiences as parents, candidly sharing their journey of guiding their children to independence and underscoring the challenges and rewards of letting go. Grounded in real-life scenarios that many parents can relate to, this conversation is informative and deeply humanizing.
Heather joined HOC as the Program/Communications Coordinator in July 2023 and recently transitioned into the role of Certified Social Worker. She holds a bachelor’s degree in social work from UW-Green Bay. She brings over 20 years of experience in social work, particularly in the HIV/AIDS community and foster care/adoption. Heather has extensive experience in case management, advocacy, crisis intervention, and connecting individuals with essential resources. She is also skilled in program development, community outreach, and patient education.
As part of her role at HOC, Heather cohosts Beyond the Bleeds, a podcast dedicated to helping individuals navigate life with bleeding disorders.
She lives near Lake Michigan with her children and her Boxer dog, Boston. In her free time, she enjoys reading, traveling, and kayaking.
John is a former International Certified Arborist and moved to Wisconsin in 2005 from the Pacific Northwest. He began his nursing career shortly thereafter and has been a lab technician and Research Coordinator with The Hemophilia Outreach Center since 2016.
John plays guitar with several local music groups outside the clinic and hosts a YouTube channel focused on sports cards and memorabilia collecting.
“Transition doesn’t just happen from childhood to adulthood—it happens in healthcareand in every aspect of life.” – John Mazzariello
Today on Beyond the Bleeds:
Transition in life isn’t limited to healthcare; it encompasses various stages and challenges.
Heather and John share personal parenting stories to illustrate letting go and teaching independence.
Healthcare transitions are crucial, especially in preparing children and teens to take control of their health.
John and Heather emphasize the role of advocacy—whether it’s dealing with teachers, doctors, or even car dealerships.
Overcoming the initial fear of letting kids drive is a key parental challenge.
Resources like mentors, nutritionists, and proper communication channels can significantly aid these transitions.
Preparing adults with bleeding disorders for their retirement years is an emerging focus area, emphasizing the importance of planning.
Educating adult children about their aging parents’ bleeding disorders is crucial for effective support.
Resources Mentioned:
NHPCC (National Hemophilia Program Coordinating Center): https://www.bleeding.org/
MyChart: https://www.mychart.com/
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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post Healthcare Independence and Transition Challenges with Heather & John appeared first on Hemophilia Outreach Center.
27 min
January 20, 2025The Impact of Gene Therapy with Dave Novak & Rochelle Ginter
Today on Beyond the Bleeds, we welcome Rochelle Ginter, RN, at the Hemophilia Outreach Center in Green Bay, Wisconsin, and David Novak, who shares his experience receiving gene therapy for hemophilia A. We delve into the mechanics of hemophilia A, the latest advancements in gene therapy, and David’s journey in transforming his treatment approach. The conversation highlights expectations, impacts, and the broader implications of gene therapy in managing hemophilia.
Rochelle Ginter is a registered nurse with specialized hemophilia care expertise at the Hemophilia Outreach Center. Her deep understanding of hemophilia treatments and patient support has made her invaluable in advancing care and educational outreach. David Novak, a recipient of the groundbreaking gene therapy Roctavian, shares his journey navigating severe hemophilia A from birth to benefiting from modern gene therapy, providing a personal look at its transformative potential.
“I always wanted to be on the cutting edge of treatments to try and haveas normal a life as possible.” – David Novak.
Today on Beyond the Bleeds:
Hemophilia A is a genetic disorder characterized by a deficiency in factor VIII, necessary for blood clotting.
Gene therapy for hemophilia A involves using a modified virus to deliver a working copy of the factor VIII gene to liver cells.
Traditional treatments require infusions multiple times a week, while gene therapy aims to reduce or eliminate this need.
Candidates for gene therapy must be adult males with severe hemophilia A, no active infections, and no antibodies to the specific vector virus.
Pre-treatment requirements include extensive lab tests and liver health checks.
Post-treatment care includes regular blood draws, monitoring of factor VIII levels, and liver health.
Patients undergoing gene therapy need to adopt healthier lifestyles, including no alcohol and smoking, for at least a year post-treatment.
Gene therapy isn’t labeled as a cure but aims to significantly reduce the annual bleeding rate and improve patients’ quality of life.
Resources Mentioned:
BioMarin: https://www.biomarin.com/
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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post The Impact of Gene Therapy with Dave Novak & Rochelle Ginter appeared first on Hemophilia Outreach Center.
32 min
January 06, 2025 Hemophilia in the Classroom: Insights from Nurses, Parents & Patients
Today on Beyond the Bleeds, John and Heather sit down with Kelli Birk and Crosby Willett, alongside Tricia Delaney, a nurse at the Hemophilia Outreach Center in Green Bay, Wisconsin, to discuss the importance of school in services for children with bleeding disorders. The conversation covers what these in-services entail, how they benefit both students and school staff, and personal experiences from Kelly and Crosby on navigating the school system with a bleeding disorder.
Tricia Delaney is a nurse at the Hemophilia Outreach Center and has dedicated her career to educating and supporting patients with bleeding disorders. Kelli Birk, a seasoned advocate for her son Crosby Willett, who has severe hemophilia A and Von Willebrand’s type one, shares invaluable insights from their journey through the school system. Together, they emphasize the importance of community education and proactive management in ensuring the well-being of children with such health conditions.
“Knowledge is power. But also, we want all of these kids to be treated just like any other child.” – Tricia Delaney
Today on Beyond the Bleeds:
• School in-services for bleeding disorders help educate teachers, school nurses, and sometimes even the entire class.• Common misconceptions about bleeding disorders include the belief that individuals will bleed profusely, while in reality, they bleed for a longer duration.• These educational sessions can be arranged at the beginning of the school year and any time parents or school staff request them.• The Hemophilia Outreach Center offers these in-services to students at all educational levels, from daycare to college.• Visual tools like ‘blood soup’ and vein finders are effective in helping children understand bleeding disorders.• Crosby’s personal experiences highlight the importance of peer education and having proactive school staff.• An individualized health plan is provided to schools, detailing specific care actions for children with bleeding disorders.• Parents are encouraged to use the Hemophilia Outreach Center’s resources, including a texting line for quick communication.
Guest Contact Information:
Hemophilia Outreach Center: https://hemophiliaoutreach.org/
Resources Mentioned:
Hemlibra Information: https://www.hemlibra.com
Von Willebrand Disease Information: https://www.bleeding.org/bleeding-disorders-a-z/types/von-willebrand-disease
Green Bay Area Hemophilia Resources: https://hemophiliaoutreach.org/patient-resources/
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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post Hemophilia in the Classroom: Insights from Nurses, Parents & Patients appeared first on Hemophilia Outreach Center.
25 min
December 23, 2024Exploring Health Literacy and Resilience with Dr. Bridget Freeman
Today on Beyond the Bleeds, we welcome Dr. Bridget Freeman to discuss the essential elements of comprehensive health outcomes. We dive into the multifaceted approaches required to ensure long-lasting health improvements, encompassing agriculture, child education, social determinants, and more. Our conversation touched on the profound implications of Adverse Childhood Experiences (ACEs) and the increasing role of health literacy in patient care.
Dr. Bridget Freeman hails from Leeds, Yorkshire, England, and boasts an impressive educational and professional background. She graduated with an MBBS in medicine and surgery from the University of Newcastle upon Tyne, completed her residency in general pediatrics at the University of Florida, and finished a fellowship in pediatric hematology and oncology. Dr. Freeman is board-certified in pediatrics, pediatric hematology and oncology, and medical acupuncture, bringing a wealth of knowledge and holistic care perspectives to our discussion.
“The secret to better health lies in addressing all aspects of life, not just one.” ~Dr. Bridget Freeman
Today on Beyond the Bleeds:
Comprehensive healthcare requires changes in agriculture, animal care, and education.
Social determinants of health are now more frequently considered in healthcare assessments.
Adverse Childhood Experiences (ACEs) have far-reaching impacts, including increased risk of drug use, promiscuity, and serious health issues.vc
Resilience training can help mitigate the adverse effects of high ACE scores.
Trauma-informed care for children with high ACE scores remains inadequate.
Health literacy is crucial for maintaining health and managing diseases effectively.
Societal values need to shift from financial success to time for reflection and self-care.
Immigrants face unique challenges in adapting to new healthcare systems without structured guidance.
Resources Mentioned:
HealthyChildren.org
Chopra Meditation App
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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post Exploring Health Literacy and Resilience with Dr. Bridget Freeman appeared first on Hemophilia Outreach Center.
36 min
November 25, 2024Seamless Healthcare Transition for Bleeding Disorders with Andrea Buxton & Erica Brock
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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post Seamless Healthcare Transition for Bleeding Disorders with Andrea Buxton & Erica Brock appeared first on Hemophilia Outreach Center.
26 min
November 11, 2024Beyond Heavy Periods: Exploring Menorrhagia and Bleeding Disorders with Andrea Buxton and Nora Schmitt
Today on Beyond the Bleeds, we sit down with Andrea Buxton, a nurse practitioner at the Hemophilia Outreach Center (HOC), and Nora Schmitt, a community member and patient advocate. We discuss the launch of HOC’s new menorrhagia clinic in Green Bay, Wisconsin, diving into the complexities of diagnosing and treating excessively heavy menstrual periods. From understanding the “7 to 1 rule” of menorrhagia to the significant role of self-advocacy and community awareness, this episode sheds light on an often-overlooked aspect of women’s health.
Andrea Buxton is a dedicated nurse practitioner at the Hemophilia Outreach Center in Green Bay. Her expertise in uncovering and managing bleeding disorders has been pivotal in diagnosing many individuals who, like Nora Schmitt, have struggled with undiagnosed symptoms for years. Andrea’s commitment to education and patient care is making a profound impact on community health.
“Advocacy is crucial; don’t let dismissive attitudes from healthcare professionals prevent you from getting the care you need.” – Nora Schmitt
Today on Beyond the Bleeds:
Menorrhagia is described by the “7 to 1 rule”: periods lasting over seven days, changing protection every two hours, or passing clots the size of a quarter or larger.
Heavy menstrual periods can lead to other health issues, like iron deficiency and anemia.
Approximately one-third of young individuals with heavy menstrual cycles may have an underlying bleeding disorder.
HOC’s menorrhagia clinic offers affordable testing options and engages actively with local gynecologists for better referrals.
Delayed diagnosis is common, with the CDC noting an average 16-year gap between onset and diagnosis for von Willebrand disease.
Initial testing includes basic coagulation labs, thyroid levels, blood count, and iron levels, with further specialized tests if necessary.
Treatment options vary from hormone therapies, such as oral contraceptives and IUDs, to medications like Lysteda, with one-year supply plans and follow-ups.
Resources like the Foundation for Women and Girls with Bleeding Disorders and the National Bleeding Disorders Foundation offer educational support and information on local clinics.
Guest Contact Information:
Andrea Buxton: Hemophilia Outreach Center (HOC) https://www.hocgb.org
Resources Mentioned:
Foundation for Women and Girls with Bleeding Disorders: https://www.fwgbd.orgNational Bleeding Disorders Foundation: https://www.hemophilia.orgCDC Treatment Centers Directory: https://www.cdc.gov/ncbddd/hemophilia/treatment.html
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.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
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!
The post Beyond Heavy Periods: Exploring Menorrhagia and Bleeding Disorders with Andrea Buxton and Nora Schmitt appeared first on Hemophilia Outreach Center.
32 min

About Beyond the Bleeds

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Beyond the Bleeds is your go-to podcast for navigating life with bleeding disorders like hemophilia, von Willebrand disease, and more. Each episode brings expert insights, inspiring personal stories,…

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Beyond the Bleeds

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About Beyond the Bleeds