On this episode, host Dr. Rachel Grace interviews Dr. Satheesh Chonat, a pediatric hematologist and expert in red cell disorders. They discuss Dr. Chonat’s career path and focus on the complexities of managing anemia in patients with pyruvate kinase deficiency, emphasizing the role of the spleen. They explore why splenectomy might be considered, potential risks and benefits, and the importance of individualized patient care. They also cover post-splenectomy considerations such as infection risks, the possibility of needing lifelong vaccinations, and the management of complications.

For more information on International Guidelines for the Diagnosis & Management of Pyruvate Kinase Deficiency: https://pkdguidelines.org/

SHOW DESCRIPTION

Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD. Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community. Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.

TRANSPARENCY STATEMENT

Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are 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 Rachael Grace and guest, Dr. Satheesh Chonat have been compensated for their time.

On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachel Grace is joined by patient advocate leaders Tamara Schryver of Thrive with PKD and Alejandra Watson of the PKD Foundation to discuss the newly available international guidelines for diagnosing and managing pyruvate kinase deficiency (PKD). The discussion highlights the importance of these guidelines in providing standardized care, especially in regions lacking specialized hematologists, and the role of patient and caregiver perspectives in their development. Topics covered include the challenges of managing PKD without guidelines, the comprehensive approach taken to create the new guidelines, and the impact of these guidelines on the global PKD community. The episode emphasizes the significance of individualized care, shared decision-making, and the critical need for mental health support for PKD patients and their families.

For more information on the International Guidelines for the Diagnosis & Management of Pyruvate Kinase Deficiency: https://pkdguidelines.org/

For more information on the Thrive with Pyruvate Kinase Deficiency organization, visit: https://thrivewithpkd.org/

For more information on the Pyruvate Kinase Deficiency Foundation, visit: https://www.pkdf.org/

SHOW DESCRIPTION

Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD. Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community. Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.

TRANSPARENCY STATEMENT

Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are 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 Rachael Grace and guests Tamara Schryver and Alejandra Watson have been compensated for their time.

On this episode, Dr. Rachael Grace talks with the King family. Jennifer and Jerry King have been raising William and Lily. Both have pyruvate kinase deficiency and we discuss how they’ve managed the disease with their two children..

SHOW DESCRIPTION

Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD. Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community. Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.

TRANSPARENCY STATEMENT

Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are 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 Rachael Grace and guests, the King family, have been compensated for their time.