Avsnitt
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In the latest episode of "Bruised Not Broken: Life with Glanzmann's Thrombasthenia," Melissa Zdziarski and guest Lauren Hurley share their heartfelt stories of navigating motherhood while affected by GT. Lauren, a GT patient from Massachusetts, recounts her lifelong battle with Glanzmann's Thrombasthenia and her determination to become a mother through adoption. The episode explores the complexities of the adoption process, touching on emotional challenges, financial considerations, and the significance of support networks. Melissa and Lauren offer valuable insights and encouragement for individuals with GT considering adoption, emphasizing the importance of research and communication with healthcare providers.
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In this podcast, host Taylor and guest Robie share a heartfelt conversation about Glanzmann's Thrombasthenia, a rare genetic bleeding disorder. They discuss Robie's journey, struggles, surgeries, and life lessons. The dialogue covers adapting to the disorder, family decisions, and not letting it limit one's life.
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Saknas det avsnitt?
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WE'RE BACK!!! After a brief hiatus while planning and organizing the 2023 GRF Conference, Bruised Not Broken: Life with Glanzmann's Thrombasthenia is back.
This episode is slightly different than other episodes, and that's because not only were we able to record it together in person, but we sat around a table and just had a conversation about growing up with GT, transitioning to adulthood, and looking toward the future.
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Taylor and Peter chat with Luke Pembroke from Haemnet.
Luke is the Director of Community Engagement with Haemnet and spearheads their podcast, Haemcast. Haemnet is a specialist research and communications consultancy in the bleeding disorder community. You might be familiar with their name; they conducted the Glanzmann's 360 survey. It was during a podcast interview about the Glanzmann's 360 survey with Luke and their Director of Research, Kate Khair, that Peter and Taylor discovered that Luke was born with severe hemophilia B, and during the pandemic, he was a participant in a gene therapy clinical trial. With Dr. Wilcox's promising gene therapy research and a potential cure right around the corner, they knew they wanted to pick Luke's brain more on the process of his gene therapy.
This episode dives into the who and what of Haemnet as well as diving into Luke's own experiences growing up with a severe bleeding disorder and his journey with gene therapy.
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Glanzmann's 360 Survey
Luke's Video -
April’s episode of Bruised Not Broken: Life with Glanzmann’s Thrombasthenia features Dr. Alan Michelson.
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Dr. Michelson’s achievements throughout his almost 50-year career in medicine are numerous. He is currently Professor of Pediatrics and Medicine, Emeritus at Harvard Medical School. He also serves as the Center for Platelet Research Studies’ Director Emeritus. He was formerly the Director of the Thrombosis and Anticoagulation Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
Dr. Michelson is the editor of the highly awarded textbook Platelets (Elsevier/Academic Press), which integrates the entire field of platelet biology, pathophysiology, and clinical medicine into a comprehensive source of knowledge about platelets for clinicians, pathologists, and scientists. And in 2019, he received the 1st Annual Esteemed Career Award from the International Society on Thrombosis and Haemostasis.
Dr. Michelson’s work with Glanzmann’s Thrombasthenia is well-known and highly respected in the medical world. He has diagnosed and treated many with GT, some of who traveled specifically to see him. Though he doesn’t see patients anymore, Dr. Michelson is still a wealth of knowledge for those navigating a Glanzmann’s diagnosis. -
Esme Vazquez found her calling in life through her work in occupational therapy. She believes having Glanzmann's Thrombasthenia helps her empathize and better care for the children she works with. Advocating for her patients became a passion that spilled over into her personal life and fueled her drive to advocate for the voiceless in her world of ultra-rare bleeding disorders.
In a short time, she has become a champion for those underserved and is making waves in the national bleeding disorder community. She now works with the National Hemophilia Foundation on the National Research Blueprint to correct those gaps in patient care.
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Community Voices in Research -
Jessica and her husband, Nick, were informed of Mia’s Glanzmann’s Thrombasthenia diagnosis when Mia was just four months old. Now, two years after that diagnosis, Jessica is her daughter’s biggest advocate and is determined to spread awareness and education throughout her community.
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Join us with special guest host Glanzmann’s Research Foundation’s secretary, Melissa Zdziarski, as we speak with Jessica about navigating through a GT diagnosis for her daughter, Mia. -
In this episode, we turn inward and speak with our very own Peter Zdziarski and Julia Smith. They allow us to take a glimpse into their lives growing up with Glanzmann's Thrombasthenia by sharing their highs and lows throughout the years. These two jump outside of their comfort zones to encourage more people within the GT community to share their stories.
If you want to share your story, you can do so in our website's Faces of GT section.
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Join Peter and Taylor as they speak with Dr. David Wilcox, who has spent close to 30 years researching a cure and advocating in the medical research community for Glanzmann’s.
Tune in to hear how advances in the medical field have brought him close to a cure and how you can help him get even closer.
DISCLOSURE: Dr. David A. Wilcox, Ph.D., is the inventor, President, and Founder of Platelet Targeted Therapeutics, LLC.He has an equity interest and intellectual property rights in the company.
Dr. Wilcox is an Associate Professor of The Department of Pediatrics HEM/ONC/BMT at the Medical College of Wisconsin. The Content of this PODCAST does not necessarily represent the official views of the Medical College of Wisconsin or its sponsors.
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