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Dr. Staci Martin joins us for a conversation that explores various aspects of mental health and self-care for individuals with sickle cell disease, particularly those undergoing the curative therapy process. The chapters cover topics such as common mental health issues, preparing for curative therapy, identity crisis and self-discovery, developing mental health tools, support for individuals unable to pursue curative therapy, establishing healthy boundaries, challenges of identity crisis and survivor's guilt, qualifications for a therapist, self-help resources, and acceptance and commitment therapy (ACT). The conversation emphasizes the importance of psychological flexibility and finding support in one's tribe. In this conversation, Staci and Dima discuss the power of thoughts and beliefs in shaping our lives. They explore the concept of limiting beliefs and how they can hold us back from reaching our full potential. They also discuss strategies for identifying and challenging these beliefs, as well as creating empowering beliefs that support our goals and aspirations. The conversation emphasizes the importance of taking action and aligning our thoughts with our values.
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This episode concludes part two of the interview with Genesis Jones. She shares her experience with post-transplant complications, specifically hemolytic anemia, and the treatments she has undergone. She discusses the challenges of managing chronic pain and the impact it has on her mental health.
Later in the episode, Wunmi and Dima interview Wynona Coles, the research lab manager at the National Heart, Lung, and Blood Institute at the National Institutes of Health. They discuss curative therapy options for sickle cell disease, with a focus on gene therapy. They cover topics such as the role of the referral transplant coordinator, eligibility criteria for gene therapy, pre-testing for the therapy, the process of stem cell collection, and the success stories of curative therapy. They also touch on the FDA approval of gene therapy and the timeline for the entire process.
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Saknas det avsnitt?
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In this conversation, Dr. Caterina Minniti discusses curative therapies for sickle cell disease, focusing on gene therapy. She explains the process of preparing for gene therapy, including the discontinuation of hydroxyurea and the use of blood transfusions. Dr. Minniti also discusses the ideal patient for gene therapy, the timeline for the preparation process, and the manufacturing process of edited stem cells. She compares and contrasts gene therapy with stem cell transplantation and bone marrow transplantation, highlighting the potential complications and ongoing research in the field.
We are also joined by Genesis Jones. Genesis is a sickle cell warrior, survivor, advocate, student, and speaker, shares her journey with curative therapy. She discusses her life before the therapy, the motivation behind pursuing it, the challenges she faced during the transplant journey, and the concerns and side effects she experienced.
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Welcome to episode 3 of #ThroughTheGenes.
Amanda Olaghere shares her experience as the caregiver to her husband, Jimi, who participated in a gene therapy clinical trial for sickle cell disease. Before the trial, their lives were filled with constant hospital visits and emergency room visits due to Jimi's pain crises. The decision to participate in the trial was made after reading an article about another patient's success story (Victoria Gray). The couple weighed the risks and logistics, including Jimi's work, Amanda's pregnancy and a global pandemic. Amanda discusses the challenges of being a caregiver, including adjusting to hospital life, outsourcing tasks, and managing her mental health. Despite the difficulties, the trial brought hope and a sense of relief for their future. #ThroughTheGenes provides an in-depth look at the lived experiences of patients who have participated in the curative process, sharing their highs, lows, and everything in between. This series is designed for patients, caregivers, community-based organizations, researchers, and educators, aiming to help patients and their support networks navigate emerging developments in gene therapies for sickle cell disease.Subscribe to the #ThroughTheGenes email list to stay up to date as new episodes, tools, and resources become available, and to receive other TTG-related news.To learn more about #ThroughTheGenes, visit www.ThroughTheGenes.com.Don't forget to like, comment, and subscribe for more episodes!
YouTube episode:
https://youtu.be/ZzzvIOizFtM#SickleCellDisease #GeneTherapy #Healthcare #Podcast #ThroughTheGenes #SickleCellAwareness -
Welcome to Episode 2 of #ThroughTheGenes. In this episode, we hear from Jimi Olaghere a patient who successfully undergone a curative therapy.
#ThroughTheGenes provides an in-depth look at the lived experiences of patients who have participated in the curative process, sharing their highs, lows, and everything in between. This series is designed for patients, caregivers, community-based organizations, researchers, and educators, aiming to help patients and their support networks navigate emerging developments in gene therapies for sickle cell disease.Subscribe to the #ThroughTheGenes email list to stay up to date as new episodes, tools, and resources become available, and to receive other TTG-related news.To learn more about #ThroughTheGenes, visit www.ThroughTheGenes.com.Don't forget to like, comment, and subscribe for more episodes!
Youtube Episode: https://youtu.be/Ykg9xrNgnL0#SickleCellDisease #GeneTherapy #Healthcare #Podcast #ThroughTheGenes #SickleCellAwareness
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Welcome to Episode 1 of #ThroughTheGenes, a show that highlights the risks, benefits, and limitations of cell and gene-based therapies as a curative option for sickle cell disease. In this inaugural episode, we delve into the history of sickle cell research with esteemed guests Vence Bonham Jr., JD, and Dr. Matthew Hsieh.#ThroughTheGenes provides an in-depth look at the lived experiences of patients who have participated in the curative process, sharing their highs, lows, and everything in between. This series is designed for patients, caregivers, community-based organizations, researchers, and educators, aiming to help patients and their support networks navigate emerging developments in gene therapies for sickle cell disease.In this episode, you will learn:-The historical milestones in sickle cell research
-Key contributions by researchers and medical professionals
-How past research has shaped current treatment options and future possibilities
-The clinical information referenced in the show comes from patient educational materials developed by the Democratizing Education for Sickle Cell Disease Gene Therapy Project, supported by the National Human Genome Research Institute (NHGRI-NIH).Subscribe to the #ThroughTheGenes email list to stay up to date as new episodes, tools, and resources become available, and to receive other TTG-related news.To learn more about #ThroughTheGenes, visit www.ThroughTheGenes.com.Don't forget to like, comment, and subscribe for more episodes!#SickleCellDisease #GeneTherapy #Healthcare #Podcast #ThroughTheGenes #SickleCellAwareness
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Premiering June 19, 2024 (World Sickle Cell Day), the #ThroughTheGenes is an informative podcast series highlighting the risks, benefits, and limitations of gene-based therapies as a curative option for sickle cell disease. The show is hosted by sickle sisters, Wunmi Bakare and Dima Hendricks, taking you behind the lived experience of patients who participated in the curative process; revealing their high, lows and everything in between.
This collaborative effort aims to help patients and their support networks navigate emerging developments in gene therapies for sickle cell disease. The clinical information referenced on #ThroughTheGenes was taken from patient educational materials developed by the Democratizing Education for Sickle Cell Disease Gene Therapy Project supported by the National Human Genome Research Institute (NHGRI-NIH).
