Pyruvate Kinase Deficiency Advocacy Advisory Council (AAC)
Just Listen: Voices of PK Deficiency Podcast
Release Date: 04/20/2022
Monitoring & Management of Chronic Complications in PK Deficiency
Just Listen: Voices of PK Deficiency Podcast
On this episode of Just Listen: Voices of PK Deficiency, host Dr. Rachel Grace interviews Dr. Andreas Glenthøj, a hematologist from Copenhagen University Hospital, about his journey into genetic red blood cell disorders and the latest international guidelines for managing PK deficiency. They discuss various complications like iron overload, bone density issues, and pulmonary hypertension, along with the importance of proactive screening to improve patient outcomes. For more information on the International Guidelines for the Diagnosis & Management of Pyruvate Kinase Deficiency: ...
info_outline
Understanding the PKD Life Stage Model
Just Listen: Voices of PK Deficiency Podcast
On this episode, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, discusses the Life Stage Model initiative with patient advocacy leaders, Tamara Scriver and Alejandra Watson. They delve into the work of the PKD Advocacy Advisory Council (AAC) and how it addresses the unmet needs of the community. The conversation highlights the development of the Life Stage Model, which categorizes the physical and psychosocial symptoms of PKD across different life stages. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase...
info_outline
PKD Conference
Just Listen: Voices of PK Deficiency Podcast
On this episode of Just Listen: Voices of PK Deficiency, guest host Janie Davis (Director, Patient Advocacy at Agios) is joined by special guests Tamara Schryver, Jill Welle, and Alejandra Watson to discuss the impact and organization of the second international PKD Conference. They share their experiences, the importance of international collaboration, and key moments from the event that empowered the PKD community through advocacy, education, and personal connections. The guests also reveal future plans, including a merge of PKD organizations to form the Pyruvate Kinase Deficiency...
info_outline
Optimizing Nutrition for PK Deficiency: A Patient & Dietitian's Perspective
Just Listen: Voices of PK Deficiency Podcast
his episode, Dr. Rachael Grace welcomes back Tamara Schryver, PhD, RD, President of Thrive with PK deficiency, to discuss the essential role of nutrition and physical activity for individuals with PK deficiency. They explore the importance of iron management, vitamin intake, and tailored dietary plans developed by registered dietitians. Dr. Schryver offers insights into working with picky eaters and integrating physical activity to ensure overall health and bone density. This informative conversation emphasizes the value of a team approach, including hematologists and dietitians, for managing...
info_outline
Understanding Splenectomy in PK Deficiency
Just Listen: Voices of PK Deficiency Podcast
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. ...
info_outline
PKD International Guidelines
Just Listen: Voices of PK Deficiency Podcast
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...
info_outline
Raising Two Children with PK Deficiency
Just Listen: Voices of PK Deficiency Podcast
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,...
info_outline
Raising & Being a Teen with PK Deficiency
Just Listen: Voices of PK Deficiency Podcast
On this episode, Dr. Rachael Grace talks with Jessica Kellar and her teenage son Travis. They discuss Travis’ diagnosis, actively involving him in his own care and how to navigate life as a teenager with pyruvate kinase deficiency. 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...
info_outline
Replay: My Dad Has PK Deficiency
Just Listen: Voices of PK Deficiency Podcast
What does it mean when a parent has pyruvate kinase deficiency? On today’s episode we welcome back Nathan Thompson, a father with PK Deficiency. He has two daughters. He’s joined today by his daughter Zoe. Here, we learn about parenting with PKD and all of the challenges associated with it. 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...
info_outline
Peak Registry
Just Listen: Voices of PK Deficiency Podcast
On this episode, Dr. Rachael Grace is in conversation with Carl Lander, Chair of the Steering Committee for the Peak Registry and International Collaboration Director of Thrive with Pyruvate Kinase Deficiency. Here they discuss the latest with the Peak Registry. 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...
info_outlineOn this episode, we discuss the Pyruvate Kinase Deficiency Advocacy Advisory Council, (AAC), an international, multi-disciplinary group of experts including patients, caregivers, patient advocates and clinicians. The AAC launched a survey, which received 275 respondents from 11 countries, making it the largest of its kind for this community which resulted in a White Paper. The White Paper shares the results of the international survey exploring communication between PK deficiency patients and caregivers and their hematologists. Agios funds and supports the AAC.
We speak with AAC member, Dr. Rachael Grace, a pediatric hematologist and a clinical researcher at the Boston Children's Cancer and Blood Disorders Center about the AAC and the White Paper. We also hear from former guests Tamara Schryver and Carl Lander of Thrive with PK Deficiency Patient Organization (thrivewithpkd.org) as well as Alejandra Watson and Laura Miller-D'Angelo of the Pyruvate Kinase Deficiency Foundation (pkdf.org) who are also AAC members.
To read the AAC White Paper, Pyruvate Kinase Deficiency: Reflections on the Patient Experience to Support Treatment and Care white paper go to: https://thalassaemia.org.cy/pk-deficiency/.
SHOW DESCRIPTION
Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK 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’s on Facebook: bit.ly/KnowPKD.
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 and guests featured in this episode have been compensated for their time.
Produced by BloodStream Media