A Mother’s Hemophilia B and Inhibitor Journey

What this episode covers

In this uplifting and empowering episode, Deena Lipinski shares her 22-year journey navigating her son Tyler’s severe Hemophilia B and inhibitor diagnosis. Deena reflects on the challenges, triumphs, and lessons learned along the way, offering valuable insights for families at every stage of their own journey. From the early uncertainties to advocating for life-changing treatments, her story is filled with resilience, laughter, and the power of self-advocacy. Whether you're just beginning to navigate a bleeding disorder or approaching adulthood, this episode provides hope, inspiration, and practical advice for overcoming obstacles and embracing the future. Bio: Deena Lipinski is the mother of Tyler, a young man with severe Hemophilia B and an inhibitor. For the past 25 years, Deena has supported her son through the challenges and triumphs of managing this rare condition, all while learning to navigate the complexities of parenting without any family history of Hemophilia B. Her early years as a parent were filled with uncertainty and fear, but over time, she has grown into a strong advocate for both Tyler and the broader Hemophilia B community. In addition to her personal experiences, Deena holds a degree in Education from the University of Arizona. She has spent the past five years working as a Patient Advocate with HF Healthcare, where she assists families navigating the complexities of bleeding disorders. One of her family’s most significant milestones came in 2005 when Tyler was desensitized to Factor 9 products through immune tolerance therapy (ITT), after years of advocating for prophylactic options for patients with Hemophilia B and inhibitors. Deena is also dedicated to helping other families by mentoring those affected by inhibitors and assisting women like herself, formerly known as symptomatic carriers, to receive a diagnosis as affected females with Hemophilia. She is one of the founding members of the Arizona Blood Alliance and is affiliated with national organizations like the Coalition for Hemophilia B, the CHES Foundation, the Novo Nordisk Inhibitor Community, and the National Bleeding Disorders Foundation (NBDF). Through her blog, "Blogging About Bleeding Disorders," and as a speaker, Deena shares her family’s story, offering insights, hope, and humor to families facing similar challenges. She now engages in advocacy at the local, state, and national levels, working to raise awareness and support for the bleeding disorders community. As Tyler enters adulthood, Deena reflects on the lessons learned, the fears overcome, and the joy she’s found along the way. Deena currently splits her time between Whitefish, Montana, and Chandler, Arizona.