The Sickle Cell Podcast

What should parents watch for at home, and when is it time to go straight to the ER?

In this episode of our What Good Care Looks Like for Kids with Sickle Cell series, pediatric hematologist Dr. Jacob walks through what good care looks like for children with sickle cell disease, from shared decision-making as kids grow, to the red flags that mean it's time to seek care right away (fever, an enlarged spleen, priapism), to what a strong ER experience should look like for your child.

Dr. Jacob is the Director of the Pediatric Sickle Cell Program at Riley Pediatric Cancer and Blood Disorders and Co-Director of the Lifespan Sickle Cell Program at Indiana University.

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: Agios, ⁠Beam Therapeutics⁠, and ⁠Pfizer⁠.

What does good care actually look like for kids with sickle cell disease? Part 2: Screenings, Labs, and What to Track

In this episode of our What Good Care Looks Like for Kids with Sickle Cell series, pediatric hematologist Dr. Jacob dives into the screenings and labs every family should know. She covers why transcranial Doppler stroke screening is non-negotiable, why penicillin remains a critical preventative measure, emerging neurocognitive screening for young children, and organ-function checks that evolve as your child grows. She also breaks down the key labs to track over time, including hemoglobin, white blood cell count, platelet count, MCV, and reticulocyte count, so parents can better understand what's typical for their child and what's not.

Dr. Jacob is the Director of the Pediatric Sickle Cell Program at Riley Pediatric Cancer and Blood Disorders and Co-Director of the Lifespan Sickle Cell Program at Indiana University.

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: Agios, Beam Therapeutics, and Pfizer.

What does good care actually look like for kids with sickle cell disease?

In this episode of our What Good Care Looks Like for Kids with Sickle Cell series, pediatric hematologist Dr. Jacob breaks it down. She covers what to do the moment you get the diagnosis, building your child's medical home, and putting together the full care team, from specialists to social workers to school support.

Dr. Jacob is the Director of the Pediatric Sickle Cell Program at Riley Pediatric Cancer and Blood Disorders and Co-Director of the Lifespan Sickle Cell Program at Indiana University.

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: Vertex, Chiesi, Pfizer, and Medunik.

This episode features Damika “Dami” Jones from Netflix’s Blue Therapy. Dami and her husband, Jermaine, faced a deeply personal decision involving sickle cell disease. She shares the story behind their decision and reflects on how her sister’s experience living with sickle cell has inspired and shaped her.

What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter focuses on the evolving landscape of sickle cell research and data collection.

Dr. Kanter walks through the latest drug development approaches, such as fetal hemoglobin induction and reducing cell adhesion, while highlighting why safe data sharing through national registries is absolutely essential to advancing personalized treatments for the community.

Dr. Julie Kanter is the Co-Director of the Lifespan Comprehensive Sickle Cell Center at the University of Alabama at Birmingham and President of the ⁠National Alliance of Sickle Cell Centers⁠ (NASCC).

This episode is part of Sickle Cell 101's Research 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Research 101 sponsors: ⁠⁠Agios, Pfizer⁠, and ⁠Beam Therapeutics.

What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter focuses on navigating treatment options and disease modifiers.

Dr. Kanter breaks down the most prominent medications and therapies available today, including hydroxyurea, crizanlizumab, L-glutamine, and blood transfusions, explaining how patients and providers can work together to personalize care and find the best treatment path.

Dr. Julie Kanter is the Co-Director of the Lifespan Comprehensive Sickle Cell Center at the University of Alabama at Birmingham and President of the ⁠National Alliance of Sickle Cell Centers⁠ (NASCC).

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: ⁠Vertex⁠, ⁠Chiesi⁠, ⁠Pfizer⁠, and ⁠Medunik⁠.

What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter focuses on two pillars of quality sickle cell care: working with the right specialists and understanding the lab work that guides your treatment.

Dr. Julie Kanter is the Co-Director of the Lifespan Comprehensive Sickle Cell Center at the University of Alabama at Birmingham and President of the National Alliance of Sickle Cell Centers (NASCC).

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: Vertex, Chiesi, Pfizer, and Medunik.

What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter breaks it down. She covers establishing a medical home, working with a sickle cell specialist, navigating the Emergency Department, and building an Individualized Care Plan that works for you.

Dr. Julie Kanter is the Co-Director of the Lifespan Comprehensive Sickle Cell Center at the University of Alabama at Birmingham and President of the National Alliance of Sickle Cell Centers (NASCC).

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: Vertex, Chiesi, Pfizer, and Medunik.

In this episode, we dive into the inspiring story of Hanif Mouehla, a Harvard student and former sickle cell warrior. Hanif shares his journey of growing up with sickle cell disease, from the challenges he faced in his youth to the curative treatment that changed his life.

Support this podcast: ⁠https://anchor.fm/thesicklecellpodcast/support⁠

In this episode, we explore the journey of aging with sickle cell disease through the inspiring stories of 80-year-old Ms. Pat McGill and Linda Wade. Ms. Pat shares her decades-long experience living with sickle cell, providing invaluable insight into the challenges and triumphs of aging with the condition. Linda Wade, founder of the Mark Thomas Foundation and caregiver to her late husband who had sickle cell, joins the conversation to discuss her role in supporting the sickle cell community and her personal journey of advocacy.

Support this podcast:⁠ https://anchor.fm/thesicklecellpodcast/support