You Can Build A Big Life With Hemophilia

Gene Therapy Is Here! Are You Ready?

Send us Fan Mail [https://www.buzzsprout.com/2456987/fan_mail/new] We sit down with hematology nurse practitioner Maya Bloomberg to cut through the noise around hemophilia gene therapy, including what it can realistically change and what it cannot. We talk durability, safety, access, and the human side of decision-making so patients and families can walk into care feeling informed and empowered.  • what gene therapy aims to do in hemophilia and why “cure” can mislead  • how factor levels can rise, vary widely, and decline over time  • eligibility basics, including AAV antibody testing and why redosing is limited  • liver toxicity risk, frequent lab monitoring, and steroid protocols after infusion  • lifestyle constraints, including the recommendation for no alcohol  • family planning considerations, including viral shedding in semen and timing for conception  • why gene therapy does not stop hemophilia from being passed to children  • identity and belonging fears and how comprehensive HTCs support psychosocial needs  • access gaps in community hospitals and why establishing HTC care early matters  • telehealth options and decision tools, including WFH resources and Zebra for Care  • women carriers with real bleeding symptoms, delayed diagnosis, and the need to advocate  I would encourage everyone to complete the five-minute simple assessment at hematology.zebraforcare.com Make sure to subscribe and stay connected with the group of extraordinary achievers and pioneers. Thanks for tuning into the HemoLife Podcast. Be sure to subscribe, leave a review, and share this episode with someone who needs a spark of hope or encouragement. Follow us on Instagram @HemoLife_Podcast and YouTube for updates, guest highlights, and behind-the-scenes content. New episodes drop regularly—your story matters, and this is just the beginning.

Bleeders Have Dreams Too

Send us Fan Mail [https://www.buzzsprout.com/2456987/fan_mail/new] We sit down with Rocco Weber to connect sprint car racing, hemophilia, and the mindset it takes to live with purpose instead of fear. We dig into community, access to care, and why peer support and better tools can change what’s possible for people with bleeding disorders.  • Rocco’s vision for a first annual hemophilia racing community event in Knoxville, Iowa  • Connecting “horsepower and awareness” as a practical mindset for hemophilia life  • Learning to stay dialed in daily and avoiding the bubble mentality  • The need for mentors and role models when you grow up feeling alone  • Rejecting the “plan B” narrative and building safer paths to big dreams  • Real talk on work, money, and consequences when health problems interrupt life  • Access to care challenges, long waits for HTC appointments, and gaps in general medical knowledge  • Why peer-to-peer insight is powerful and where it can also mislead without education  • Telehealth options and Zebra for Care as a faster route to hematology guidance and gene therapy education  Make sure to subscribe and stay connected with a group of extraordinary achievers and pioneers.  Thanks for tuning into the HemoLife Podcast. Be sure to subscribe, leave a review, and share this episode with someone who needs a spark of hope or encouragement. Follow us on Instagram @HemoLife_Podcast and YouTube for updates, guest highlights, and behind-the-scenes content. New episodes drop regularly—your story matters, and this is just the beginning.

Firefighter With Hemophilia Ft. Colby Spencer

Send us Fan Mail [https://www.buzzsprout.com/2456987/fan_mail/new] We sit down with Colby Spencer, a young firefighter and EMT living with severe hemophilia B, to talk about what it takes to do a high-demand job without letting the disorder write the rules. We get real about compliance, mindset, mentorship, and why building a life matters as much as managing bleeds.  • deciding to pursue fire service after being told “no”  • being upfront about hemophilia at work and finding real support  • target joints, non-compliance lessons and keeping factor on shift  • learning to love EMS and pushing for advanced skills  • handling self-criticism after tough calls and tracking achievements  • dealing with people who misunderstand hemophilia in health care  • isolation in a small area and why community events matter  • self-infusion anxiety and the value of true mentorship  • purpose, providing for family and breaking the “safe job only” belief  • mental health, addiction and what PTSD awareness looks like on a crew  • training for fitness and a marathon while staying on prophylaxis  • fatherhood, genetics concerns and teaching a partner to infuse  Make sure to subscribe and stay connected with a group of extraordinary achievers and pioneers.  Thanks for tuning into the HemoLife Podcast. Be sure to subscribe, leave a review, and share this episode with someone who needs a spark of hope or encouragement. Follow us on Instagram @HemoLife_Podcast and YouTube for updates, guest highlights, and behind-the-scenes content. New episodes drop regularly—your story matters, and this is just the beginning.

Building A Support Network For Women With Bleeding Disorders

Send us Fan Mail [https://www.buzzsprout.com/2456987/fan_mail/new] We sit down with Tracy Hamler, founder of Free Bleeders Inc., to talk about what happens when women with bleeding disorders get dismissed, then decide to build the resources they needed all along. We dig into diagnosis, motherhood, community support, and the daily mindset shifts that help caregivers and leaders keep going when the tank is empty.  • Tracy’s path to a hemophilia diagnosis at 30  • why “symptomatic carrier” language can hide real symptoms  • building Free Bleeders Inc. to empower women with bleeding disorders  • retreats, monthly events, and creating sisterhood and accountability  • practical help like education, copay assistance, premium assistance, and emergency support  • supporting moms by supporting their whole family  • filling your cup so your kids see you healthy  • pressure cooker moments, leadership, and needing affirmations too  • small daily steps that build momentum over time  Follow me on all social media platforms at Tracy Hamler, that’s T-R-A-C-Y-E, H A M L E R. Also follow Free Bleeders Inc. on all platforms as well. Or you can go to freebleeders.org for more information. Just sign up for our email listing. Thanks for tuning into the HemoLife Podcast. Be sure to subscribe, leave a review, and share this episode with someone who needs a spark of hope or encouragement. Follow us on Instagram @HemoLife_Podcast and YouTube for updates, guest highlights, and behind-the-scenes content. New episodes drop regularly—your story matters, and this is just the beginning.

You Can Build A Big Life With Hemophilia

Send us Fan Mail [https://www.buzzsprout.com/2456987/fan_mail/new] We sit down with Johnny Hawkins to talk about surviving a life-threatening brain bleed as a toddler and growing into a confident adult with severe Hemophilia A. We get real about bullying, treatment discipline, staying active, and why your bleeding disorder can shape you without limiting you. • Johnny’s origin story as the first known case in his family • A childhood intracranial bleed and craniotomy plus how his dad’s CPR training saved his life • Parents and friends who treat him as capable not fragile • Bullying and the emotional cost of looking “fine” one day and injured the next • Prophylaxis infusions, ports, target joints and learning to feel a bleed coming • Training and sports with hemophilia plus smart risk taking without “bubble wrap” • Building a hands-on custom automotive business and rejecting limiting career advice • New hemophilia treatments, reactions, and what aging with hemophilia changes • Consistency, mentorship and community as the difference between inspiration and lasting change Make sure to subscribe and stay connected with a group of extraordinary achievers and pioneers. Thanks for tuning into the HemoLife Podcast. Be sure to subscribe, leave a review, and share this episode with someone who needs a spark of hope or encouragement. Follow us on Instagram @HemoLife_Podcast and YouTube for updates, guest highlights, and behind-the-scenes content. New episodes drop regularly—your story matters, and this is just the beginning.