Episode 3: The Caregiver Perspective w/ Amanda Olaghere
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Show Notes
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