Beyond the Bleeds

Today on Beyond the Bleeds, Heather and John are joined by Angie Beach, Family Nurse Practitioner at HOC, to explore the importance of primary care for people with bleeding disorders and how comprehensive care goes beyond managing a bleeding disorder alone.

Drawing on her years of experience in traditional primary care, Angie shares what she’s learned since joining HOC, including some of the misconceptions she previously had about bleeding disorders and the unique challenges patients can face when navigating healthcare. She also discusses what makes the comprehensive care model at Hemophilia Treatment Centers different and how access to specialized services and coordinated care can benefit patients and families.

The conversation explores the relationship between primary care providers and HTCs, including the importance of communication, collaboration, and understanding each patient’s individual needs. Angie explains why primary care providers don’t need to know everything about every rare disorder, but they do need to listen, respect their patients’ experiences, and work alongside specialists to provide the best possible care.

Most importantly, Angie emphasizes why having a primary care provider is essential, even for patients who regularly visit their HTC. From preventive screenings and vaccinations to managing everyday health concerns and chronic conditions, primary care plays an important role in maintaining overall health. Angie also shares how HOC’s primary care services can help patients access this care alongside their bleeding disorder treatment.

“We do owe it to them to listen and to validate their experiences, learn what we can about their diagnosis and needs, admit what we don’t know and respect their level of knowledge about their own health and conditions.” — Angie Beach

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 share real stories and helpful conversations to support families at every stage.

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The post Why Primary Care Matters for People with Bleeding Disorders with Angie Beach appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by Kristin Petrie, HOC Nurse Coordinator, to talk about what people with bleeding disorders should know before their next procedure and why contacting your Hemophilia Treatment Center ahead of time is so important.

When most people hear the word “procedure,” they think of major surgery, but for someone with a bleeding disorder, the list can be much broader. Kristin explains why patients should reach out before dental work, colonoscopies, biopsies, joint injections, tattoos, piercings, physical therapy, dry needling, and other activities that could potentially cause bleeding.

Kristin also takes listeners behind the scenes to explain what happens after a patient calls HOC. From developing an individualized treatment plan and coordinating with outside providers to making sure medication is available and working through insurance approvals, there can be a lot to put in place before the day of a procedure. Calling early gives the care team more time to prepare and coordinate the details.

Most importantly, Kristin reminds patients that they should never worry about bothering their HTC or wonder whether something is important enough to call about. Every patient and situation is different, and the HOC team would much rather answer a question ahead of time than address bleeding afterward. When in doubt, reach out.

“The earlier we know, the more options we have. As soon as you know that you’re going to have a procedure, as soon as you get it scheduled, the next step should be to call us.” — Kristin Petrie

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 share real stories and helpful conversations to support families at every stage.

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The post Procedures and Bleeding Disorders: When to Contact Your HTC with Kristin Petrie appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined once again by Christopher George and his daughter, Felicity Grajeda, for part two of their conversation exploring how hemophilia shapes a family and the lessons, experiences, and support that can carry from one generation to the next.

Christopher shares what he hoped his daughters would learn from watching him live with hemophilia, including perseverance, independence, and not allowing a bleeding disorder to become an excuse or define what is possible. He also reflects on how advances in treatment have changed life with hemophilia and influenced his own decisions about starting a family.

Felicity shares her experience thinking about the possibility of having a child with hemophilia, the conversations she had with her husband, and what it was like when they learned their son had the disorder. Growing up surrounded by hemophilia gave her knowledge and a strong support system to lean on as she began navigating bleeding disorder care as a parent herself.

Together, Christopher and Felicity offer advice for other families, from building independence and understanding healthy limitations to leaning on HTCs, local chapters, friends, and the wider bleeding disorders community. They also discuss the importance of talking openly about hemophilia, passing knowledge along to others, and making it an important part of life without allowing it to become your entire identity.

“Lean into your support group. Make sure that other people around you know that you’re open and willing to accept support from them as well.” — Felicity Grajeda

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 share real stories and helpful conversations to support families at every stage.

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The post How Hemophilia Shapes a Family, Part 2 with Christopher George and Felicity Grajeda appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by Christopher George and his daughter, Felicity Grajeda, for part one of a two-part conversation exploring how hemophilia shapes a family and the different ways it can impact life from childhood through adulthood.

Christopher shares what it was like growing up with severe hemophilia, from managing painful bleeds and traveling for care to learning how to self-infuse and eventually taking greater ownership of his treatment. He reflects on how much hemophilia care has changed throughout his life and the family, friends, treatment centers, and bleeding disorders community that supported him along the way.

The conversation then shifts to family and the decisions Christopher faced when thinking about having children of his own. Felicity shares what it was like growing up with a father and other family members with hemophilia, knowing she could be a carrier, and how openly talking about bleeding disorders made it a normal part of life rather than something her family shied away from.

Through their father-daughter perspectives, Christopher and Felicity offer a unique look at how experiences with hemophilia can carry across generations while changing with advances in treatment, greater awareness, and strong community connections. Be sure to join us again in two weeks for part two of their story.

“I never once felt that it was anything to be ashamed of. It was no different than I have brown eyes and hemophilia. I just tried to be as open with it as possible.” — Christopher George

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 share real stories and helpful conversations to support families at every stage.

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The post How Hemophilia Shapes a Family, Part 1 with Christopher George and Felicity Grajeda appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and guest co-host Erica are joined by Angela Blue, Director of Member & Community Relations with the Hemophilia Alliance, for a conversation about the important work happening behind the scenes to support Hemophilia Treatment Centers (HTCs) and the patients they serve.

Angela shares the history and mission of the Hemophilia Alliance and explains how the organization works with HTCs across the country. From group purchasing and 340B pharmacy programs to legal consultation, payer relations, advocacy, and continuing education, the Alliance provides resources that help HTCs remain strong, sustainable, and focused on comprehensive patient care.

The conversation also explores challenges facing HTCs today, including insurance barriers, access to specialty medications, and shortages of healthcare providers specializing in bleeding disorders. Angela shares how the Alliance is helping address these challenges while also supporting initiatives such as genetic testing, educating insurers, and advocating for the national HTC network in Washington, D.C.

Finally, Angela looks toward the future and discusses how the Hemophilia Alliance is preparing HTCs for emerging therapies, changing insurance trends, and an evolving healthcare landscape. By listening to the needs of HTCs and bringing centers together to share knowledge and resources, the Alliance continues working to strengthen the comprehensive care patients and families rely on.

“We focus on the business of running an HTC to make sure that HTCs are sustainable and accessible to patients for the future.” — Angela Blue

The Hemophilia Alliance works behind the scenes to support Hemophilia Treatment Centers and strengthen care for the bleeding disorders community. To learn more about their mission, programs, advocacy efforts, and the work they are doing across the country, visit www.hemoalliance.org.

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 share real stories and helpful conversations to support families at every stage.

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The post Building Stronger HTCs for Better Patient Care with Angela Blue appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather is joined by guest co-host Erica and HOC Nurse Coordinator Tricia Delaney for a timely conversation about preparing for college with a bleeding disorder. Using HOC’s College Prep Checklist as a guide, Tricia shares practical advice to help students confidently transition to campus life while staying on top of their health and treatment.

The discussion covers everything from establishing infusion routines and ordering factor independently to connecting with campus health services, disability offices, and your Hemophilia Treatment Center. Tricia also explains why planning ahead, communicating with roommates and resident advisors, and creating an individualized health plan can make a significant difference if an emergency arises.

Heather, Erica, and Tricia also talk about the importance of building independence before arriving on campus. From learning to manage medications and supplies to knowing where to seek care away from home, they offer practical tips that help students feel prepared while giving caregivers greater peace of mind.

Whether you’re heading off to college for the first time, supporting a student through the transition, or simply looking for ways to build confidence and independence, this episode provides practical guidance to help make college a successful experience.

“You would rather have a plan and not need it than need a plan and not have it.” — Tricia Delaney

Planning ahead can help make the transition to college safer and less stressful. Explore these resources mentioned in the episode.

???? HOC College Prep Checklisthttps://hemophiliaoutreach.org/college-prep-checklist/

???? CDC Hemophilia Treatment Center DirectoryFind a Hemophilia Treatment Center near your college or anywhere in the United States:https://www.cdc.gov/hemophilia/treatment/treatment-centers.html

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 share real stories and helpful conversations to support families at every stage.

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The post The College Checklist for Students with Bleeding Disorders with Tricia Delaney appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by HOC’s Behavioral Health Specialist, Robin Lambrecht, for an important conversation about the connection between mental health and bleeding disorders. Robin shares how behavioral health extends far beyond a mental health diagnosis, offering support for stress, anxiety, emotional well-being, caregiver burnout, and the everyday challenges that can accompany living with a chronic condition.

The discussion explores how bleeding disorders can affect emotional health at every stage of life, from childhood through adulthood. Robin explains how chronic pain, frequent treatments, uncertainty, and social isolation can impact both patients and caregivers, while also highlighting the importance of strong support systems and meaningful community connections.

The conversation also addresses the stigma surrounding mental health and why asking for help is a sign of strength, not weakness. Robin offers practical guidance on recognizing when additional support may be needed, what to expect from counseling, and simple strategies families can use to encourage open conversations about emotions and mental wellness.

Whether you’re living with a bleeding disorder, caring for a loved one, or simply looking for ways to better support your mental health, this episode offers practical advice and reassurance that no one has to navigate these challenges alone.

“It’s okay to not be okay. Asking for help is not a failure. I think it’s a sign of courage.” — Robin Lambrecht

Looking for additional support? Explore HOC’s Behavioral Health Services, learn about upcoming HOC events and programs, connect with your local Hemophilia Treatment Center, or contact the 988 Suicide & Crisis Lifeline by calling or texting 988 if you or someone you know is experiencing a mental health crisis.

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 share real stories and helpful conversations to support families at every stage.

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The post It’s Okay to Not Be Okay: Mental Health and Bleeding Disorders with Robin Lambrecht appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by HOC’s IT Coordinator, Chris Woller, for a personal conversation about growing up with severe hemophilia B and how treatment has changed over the course of his lifetime. Chris shares his experiences navigating childhood with a bleeding disorder, the challenges of early treatment, and how advances in care have allowed him to live a full and active life.

The conversation begins with Chris’s childhood, when treatment options were limited and spontaneous bleeds often meant long plasma infusions, wheelchairs, and missing out on activities many other children took for granted. He reflects on the emotional impact of growing up with hemophilia, finding confidence through music, and learning to navigate friendships while living with a chronic condition.

Chris also shares the story of a life-threatening brain bleed that changed his perspective and ultimately strengthened his connection to the Hemophilia Outreach Center. He discusses how receiving care through a Hemophilia Treatment Center helped guide his treatment and why comprehensive care continues to play such an important role for people living with bleeding disorders.

Finally, the group reflects on how dramatically hemophilia treatment has evolved. From fresh frozen plasma and on-demand treatment to prophylaxis and today’s extended half-life therapies, Chris offers a unique perspective as someone who has experienced these advancements firsthand. He closes with encouragement for parents and young people living with bleeding disorders, reminding listeners that while hemophilia is part of who you are, it doesn’t have to define your future.

“our bleeding disorder is a part of who you are… but it doesn’t have to determine who you are.” — Chris Woller

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 share real stories and helpful conversations to support families at every stage.

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The post Living Life Beyond Hemophilia B: A Personal Journey with Chris Woller appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by Dr. Ken Friedman from Versiti Blood Center and HOC for a conversation about the evolution of hemophilia treatment. Drawing on decades of experience in hematology and bleeding disorders care, Dr. Friedman shares how treatment has changed over time and what those advances have meant for patients and families.

The discussion begins with the earliest approaches to hemophilia care, when treatment options were extremely limited. Patients often relied on rest, immobilization, blood transfusions, and supportive care while hoping bleeds would resolve on their own. Dr. Friedman explains how the development of cryoprecipitate, plasma-derived factor concentrates, and home infusions dramatically changed what was possible for people living with bleeding disorders.

The conversation also examines the challenges the bleeding disorders community faced during the HIV and hepatitis crisis of the 1980s. Dr. Friedman discusses the transition to recombinant factor products, the rise of prophylactic treatment, and how these advances helped reduce bleeding complications. As treatments improved, patients were able to live more active lives and spend less time managing bleeds.

Finally, the group looks toward the future of hemophilia care. From gene therapy to non-factor and rebalancing therapies, Dr. Friedman explains how emerging treatments continue to reshape care for people living with bleeding disorders. The episode highlights how far treatment has come and the progress that continues to improve the lives of patients and families.

“The initial care of hemophilia was mostly watch and wait and hope that you get better.” — Dr. Ken Friedman

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 share real stories and helpful conversations to support families at every stage.

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The post The Evolution of Hemophilia Treatment with Dr. Ken Friedman appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and guest co-host Erica are joined by Andrea Buxton, HOC’s Clinical Director and Nurse Practitioner, and Jill Larson, HOC’s nutritionist, for a conversation about lifestyle medicine. Together, they discuss how small, sustainable changes can improve overall health and well-being.

The discussion explores the six pillars of lifestyle medicine: nutrition, physical activity, restorative sleep, social connection, stress management, and avoiding harmful substances. Andrea and Jill explain how these pillars support overall health. They also discuss why they are important for people living with chronic conditions, including bleeding disorders.

Throughout the episode, they share practical ways patients and families can make healthier choices without feeling overwhelmed. Topics include eating more fruits and vegetables, reducing ultra-processed foods, improving sleep habits, increasing movement, and strengthening social connections.

The group also highlights how HOC’s comprehensive care model supports lifestyle medicine. Patients have access to nutrition services, physical therapy, behavioral health support, and medical care. Together, these resources help promote long-term health and wellness.

The conversation emphasizes that meaningful health improvements do not require drastic changes. Small, achievable goals often lead to lasting success. Taking a short walk, adding an extra serving of vegetables, limiting screen time, or spending more time with others can all make a difference. Over time, those small changes can have a meaningful impact.

“You don’t need to conquer all six pillars. If you have something that’s small and realistic, that’s generally more successful.” — Andrea Buxton

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 share real stories and helpful conversations to support families at every stage.

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The post Small Changes, Big Impact Through Lifestyle Medicine with Andrea Buxton and Jill Larson appeared first on Hemophilia Outreach Center.