Bringing Sickle Cell Disease to Life

Latest Episodes:

Ubuntu: I Am Because We Are Apr 01, 2022

Show notes

Young individuals living with sickle cell disease eventually age out of the pediatric units and struggle as they transition to adult care. In this episode, we hear from Kyle, a person living with sickle cell disease, about his experience transitioning from pediatric to adult care. Dr. James Eckman and Dr. John J. Strouse explain the typical problems that arise with this transition and some possible solutions to the lack of adult care networks. Lastly, Dr. Titilope Fasipe shares valuable advice for young people living with sickle cell disease as they transition from pediatric to adult care. Resources for clinicians and patients individuals living with the disease are recommended.
Learn more about sickle cell disease (https://www.hematology.org/education/patients/anemia/sickle-cell-disease) and the ASH Sickle Cell Disease initiative by visiting https://www.hematology.org/advocacy/sickle-cell-disease-initiative. Additional SCD resources for clinicians are available via https://www.hematology.org/education/clinicians/clinical-priorities/scd-resources-for-clinicians. Access an SCD toolkit from the CDC at https://www.cdc.gov/ncbddd/sicklecell/betterhealthtoolkit/index.html. Learn more about the Sickle Cell Disease coalition at http://www.scdcoalition.org/transition/medical.html.
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

An Unpredictable Childhood Mar 25, 2022

Show notes

In the past, children with undiagnosed sickle cell disease were at risk of dying in as little as nine hours of sepsis. In this episode of Bringing Sickle Cell Disease to Life, we hear more from Kyle, an individual living with sickle cell disease. Dr. Wally Smith interviews Dr. James Eckman about the importance of newborn screening. Dr. Russell Ware explains his decision to care for individuals living with sickle cell disease and to start research in this area. Learn how hydroxyurea transformed children’s lives and the stepwise approach used in developing clinical trials to treat children with this disease.
Learn more about ASH's Sickle Cell Disease initiative by visiting https://www.hematology.org/advocacy/sickle-cell-disease-initiative, and find additional information about the use of hydroxyurea for sickle cell disease via https://www.hematology.org/-/media/hematology/files/education/hydroxyurea-booklet.pdf?la=en&hash=7498C7D4A15208ED96214110693105F7.
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Progress Over Decades: We’ve Come a Long Way Mar 18, 2022

Show notes

In the first episode of Bringing Sickle Cell Disease to Life, Kyle Smith, an individual living with sickle cell disease and a leader in community advocacy, will share his story with us. Our host Dr. Wally Smith interviews a legend in the field Dr. Clarice Reid on the history of sickle cell disease. She describes two events that helped launch sickle cell disease into public awareness. Dr. Marilyn Hughes Gaston shares surprises she experienced when starting her career in sickle cell advocacy. For present day care, Dr. Russell Ware advocates for preventative medicine for individuals living with sickle cell disease. Dr. Betty Pace sheds light on research that correlates genomics with clinical outcomes and hints at the possibility of using combination therapy in the future. Lastly, an individual living with sickle cell disease and clinician Dr. Titilope Fasipe encourages listeners to join the mission of improving outcomes and equity for people living with sickle cell disease.
Learn more about ASH's Sickle Cell Disease initiative by visiting https://www.hematology.org/advocacy/sickle-cell-disease-initiative.
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Coming Soon: Bringing Sickle Cell Disease to Life Mar 11, 2022

Show notes

Coming soon: This podcast, hosted by Dr. Wally Smith of Virginia Commonwealth University, features interviews of diverse leading experts including researchers, physicians, and individuals living with the disease, exploring the history of the disease, the global impact and need for additional providers, disparity and bias in sickle cell disease, and promising news regarding the management and treatment of sickle cell disease. Learn about the past, present and future of sickle cell, and join us in the fight for sickle cell disease survival!
Subscribe to receive a notification when Episode 1 is live. Learn more by visiting https://www.hematology.org/about/podcasts-and-apps#SCD.
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

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