On this episode of Thal Pals: The Alpha Beta Revolution, patient advocate NinaMaria discusses the cultural stigmas surrounding thalassemia with three guests, Ralph Colassanti, Radeka Sao, and Erik Phaykeo. 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, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.

This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.

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. Host and guest featured in this episode have been compensated for their time.

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 Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.

This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.

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. Host and guest featured in this episode have been compensated for their time.

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 episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.

This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.

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. Host and guest featured in this episode have been compensated for their time.

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 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 strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.

This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.

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. Host and guest featured in this episode have been compensated for their time.

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: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.

This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.

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. Host and guest featured in this episode have been compensated for their time.

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 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 featured in this episode have been compensated for their time.

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 healthcare providers to keep track of essential lab tests and ensure overall health.

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 featured in this episode have been compensated for their time.

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.

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 featured in this episode have been compensated for their time.