Send us a text

Pain might be invisible to everyone else, but it shapes every choice you make. Raul joins us for a raw, unfiltered look at severe hemophilia: the joint damage that lingers, the fear of switching therapies, and the quiet courage of showing up for life anyway. From marathon training on short half-life factor to learning about Hemlibra and Alhemo at a community event, he walks us through the hard math of risk, relief, and what it really means to protect your vein health over decades.

We dig into practical tradeoffs—daily subcutaneous dosing vs. IV routines, breakthrough bleeds during activity, and why some patients still keep factor on hand even when they try a newer agent. Raul shares what changed when he met families and kids living with bleeding disorders today: longer-lasting ports, more options, and a real chance to save joints. That hope sits next to identity questions many of us feel: when you’ve lived by limits, freedom can feel risky. Community bridges that gap, giving words to what hurts and turning fear into action.

The conversation turns honest about pain management. Raul describes morphine stigma, the anxiety of refills, and the discipline that kept him steady—clear boundaries with his doctor, slow dose reductions, and zero “extras” for six years. It’s a reminder that responsible opioid use can be part of comprehensive hemophilia care when joint damage is real and severe bleeds don’t wait for stretching. Along the way, we spotlight the power of support: partners who ask how to help, friends who learn the basics, and mentors who say, “I’ve walked there.”

If this story gave you something to hold onto, share it with someone who needs to hear it, subscribe for more real conversations, and leave a review to help others find the show. Your voice keeps this community strong.

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.