Transitioning with Thal: From Pediatric to Adult Care
Thal Pals: The Alpha Beta Revolution
In this episode of Thal Pals, NinaMaria speaks with nurse practitioner Melony Avella-Howell about the challenges and solutions in transitioning from pediatric to adult care for patients with chronic illnesses like thalassemia and sickle cell disease. They discuss the importance of community support groups, tailored transition programs, and the roles of providers in helping young adults navigate this vulnerable period. Melony shares insights from her experience in hematology, emphasizing the need for individualized care plans and proactive patient advocacy. Together, they highlight the...
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A Legacy of Hope: The Cooley's Anemia Foundation Journey
Thal Pals: The Alpha Beta Revolution
On this episode NinaMaria talks with influential leaders of the Cooley's Anemia Foundation (CAF). Guests Bob Ficarra, Craig Butler, and Ralph Colasanti discuss the foundation's 70-year history, advocacy efforts, and pivotal role in advancing research and patient care for thalassemia. The conversation also emphasizes the significance of patient involvement, global outreach, and ongoing initiatives such as gene therapy and the annual CAF conference. Join us as we explore how CAF continues to impact patients' lives through comprehensive support and a strong sense of community. SHOW...
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Cultural Stigmas and Unity in the Thalassemia Community
Thal Pals: The Alpha Beta Revolution
On this episode of Thal Pals: The Alpha Beta Revolution, patient advocate NinaMaria discusses the cultural stigmas surrounding thalassemia with three guests, Ralph Colasanti, Radhika Sawh, and Erick Phyakeo. Each shares their personal experiences with the condition and the cultural barriers they have faced and overcome. The conversation highlights the importance of community, connection, and empowerment among Thal patients, aiming to break down stigmas and encourage others to share their stories. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients,...
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Life with Thalassemia: A Mother's Story
Thal Pals: The Alpha Beta Revolution
On this episode of Thal Pals, host NinaMaria talks with Maria Saradpan about her experiences as a caregiver to her daughter Camila, who has thalassemia. Maria shares her journey from initial fear and isolation to finding a supportive community and growing relationships with fellow caregivers and patients. The importance of a strong caregiver network, blood donations, and positive experiences at the hospital are highlighted. The episode also features Camila and her sister Mikayla discussing their unique bond and experiences with thalassemia. SHOW DESCRIPTION Thal Pals: The Alpha Beta...
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Mentors and Milestones: Inspiring the Next Generation of Hematologists
Thal Pals: The Alpha Beta Revolution
Join NinaMaria and Dr. Kuo in conversation with guests Dr. Priya Chandrakumaran and Dr. Hayoung Roh, hematology residents, as they share their journeys and passion for hematology. They discuss their motivations, the importance of patient-centered care, and experiences with thalassemia patients. Their insights highlight the value of mentorship and patient interactions in shaping medical careers. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each...
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Building the Perfect Thalassemia Care Team: Insights from Dr. Sujit Sheth
Thal Pals: The Alpha Beta Revolution
On this episode of Thal Pals, NinaMaria interviews Dr. Sujit Sheth, a renowned red cell doctor specializing in thalassemia and other red cell disorders. Dr. Sheth emphasizes the importance of assembling a dedicated care team, advocates for patient self-advocacy, and provides valuable insights into individualized patient care. He also discusses the impact of advancements in medical technology and the critical role of continuous communication within care teams. Tune in to learn more about optimizing care for thalassemia patients and the hopeful future of treatment options. SHOW DESCRIPTION Thal...
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Unlocking Nutrition Secrets for Hemolytic Anemias - Part 2
Thal Pals: The Alpha Beta Revolution
On this episode of Thal Pals, NinaMaria concludes our two-part series on nutrition with guest Tamara Schryver, a nutrition scientist and president of the Thrive with Pyruvate Kinase Deficiency Organization. They dive into the roles of antioxidants for those with hemolytic anemias, the controversial debate over vitamin A and E supplements, and the significance of a balanced diet. They also discuss the importance of physical activity for individuals with Thal and PKD, and how dietitians and healthcare providers can collaborate to create effective health plans. SHOW DESCRIPTION Thal Pals:...
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Navigating Nutrition for Hemolytic Anemias - Part 1
Thal Pals: The Alpha Beta Revolution
On this episode of Thal Pals, NinaMaria hosts Tamara Schryver, president of the Thrive with Pyruvate Kinase Deficiency Organization. They discuss the importance of nutrition for patients with hemolytic anemias such as thalassemia and PKD. Tamara offers practical dietary tips and emphasizes the significance of nutrient-dense foods and vitamins. Stay tuned for the next episode, where they delve deeper into these topics. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by...
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Spreading the Word: Lab Tests – Part 2
Thal Pals: The Alpha Beta Revolution
On this episode of Thal Pals, hosts NinaMaria Badalamenti and Dr. Kevin Kuo delve into the second part of their discussion on lab tests. They explore the impact of factors like menstruation, nutrition, and illness on ferritin levels, and emphasize the importance of monitoring and managing iron levels through diet and medication. They also explain how MRI is used to measure iron accumulation in vital organs such as the liver and heart, the implications of different readings, and the recommended frequency of these tests. The episode concludes with advice on working collaboratively with...
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Understanding Lab Tests: Hemoglobin and Ferritin Explained – Part 1
Thal Pals: The Alpha Beta Revolution
On this episode hosts NinaMaria Badalamenti and Dr. Kevin Kuo discuss important lab tests for thalassemia treatment. They focus on hemoglobin, explaining its role in oxygen transportation, the significance of trends over specific numbers, and the differences for transfusion-dependent and non-transfusion-dependent patients. They also introduce ferritin, describing its function, the importance of trends, and the use of MRI for accurate iron measurement. The conversation emphasizes the need for monitoring and understanding lab results in context with patients' overall health and lifestyle. ...
info_outlineOn this episode your host, Dr. Kevin Kuo welcomes guest host Laurice Levine as they speak with Ralph Colasanti who is the executive president of the Cooley's Anemia Foundation. For patient resources you can visit Cooley’s Anemia website: https://www.thalassemia.org/
SHOW DESCRIPTION
Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia. Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.
TRANSPARENCY STATEMENT
Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.