The Sickle Cell Podcast

When should conversations about puberty and mental health start, and what should your child know before leaving pediatric care? In this episode of our What Good Care Looks Like for Kids with Sickle Cell series, pediatric hematologist Dr. Jacob talks about growing up with sickle cell disease, from delayed puberty and early sexual and reproductive health conversations, to how mental health is screen...

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 en...

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...

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....

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 redu...

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...

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 th...

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...

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...

Join host Maia Garrison as she speaks with passionate advocates shining a light on sickle cell disease. La'Shardae Scott, the 2022 SCAY Advocate of the Year, discusses her non-profit organization that bridges the gap by transitioning pediatric patients to adult sickle cell care. Faith Adjei-Sarpong, the Digital SCAY Advocate of the Year, shares how she inspires warriors through social media to...

Join hosts Cassandra Trimnell and Maia Garrison as they hear from Holly John, Senior Director of Patient Advocacy at Agios Pharmaceuticals, recognized as the SCAY Community Partner of the Year for her groundbreaking work integrating patient voices into drug development and advocacy. Also, meet Ayana Johnson, the SCAY Youth Advocate of the Year, a high schooler who has launched a nonprofit, lobbied...

Featuring Christina Augustine and Dr. Alexander I. Ngwube, MD, this episode provides an comprehensive exploration on bone marrow transplant (BMT) for sickle cell disease, blending personal experiences with professional expertise. A huge thank you to Be the Match for Sponsoring this episode. For more information about Be the Match, visit: https://sicklecellconnect.com --- Support this podcast: http...

For the month of July, we are bringing awareness to sickle cell trait. Abibat Oshiobugie Suleiman is the host for today's episode. Abi talks with special guests Abisola and Seyi Shof, also known as “the Shofs” on social media, about their involvement in the sickle cell community, their love story with SCT, the challenges they had to face with telling their families, and weighing the options for ma...

The first of our Hot Topic 🔥 series . Hosts Stephen and Cass have THAT conversation about two individuals wanting to have children but are faced with a chance of having a child with sickle cell disease.  Do you believe people who are "genetically incompatible" (like AS and AS) should have children? Send in your responses to podcast@sc101.org

Cass chats with the 2021 Sickle Cell Advocates of the Year (SCAY) Award recipients about how they got involved and what they’ve achieved. This episode features: Biba Tinga - Sickle Cell Advocate of the Year Siliana Coelho - Digital Sickle Cell Community Advocate of the Year Sarah Masamba - Sickle Cell Healthcare Profession (HCP) Advocate of the Year A big thank you to our partner AllStripes! Visit...

Caregiving for sickle cell is underrated... Celebrating National Family Caregiver's Month, it's just Stephen and Cass this episode talking about what caregiving for sickle cell looks like – even caregiving from abroad. There is mild humor sprinkled in too. 😬  A HUGE THANK YOU TO OUR SPONSOR: Sickle Cell Speaks  #SickleCellSpeaks is people sharing their stories and strengths living with...

Hosts Dr. Stephen Boateng and Cass Trimnell talk to workplace diversity and inclusion expert Tayo Rockson, MBA about discuss tips, accommodations, and how to navigate the workplace when living with sickle cell disease. Find Tayo Rockson on Instagram: https://www.instagram.com/tayorockson Website: https://tayorockson.com Podcast: https://podcasts.apple.com/us/podcast/as-told-by-nomads/id910739730 A...

Dr. Jonathan Lassiter is a clinical psychologist living with sickle cell disease. Listen to his and guest host Naim Rasul’s gems on managing mental health issues for sickle cell disease. Personal Website Talks at the Schomburg Book: Black LGBT Health in the United States Twitter: @matjl Instagram: @jmlassiterphd Pronouns: he, him, his

Did you think Renal Medullary Carcinoma (RMC – a kidney cancer) was a sickle cell trait complication? Listen and learn more about this rare, but aggressive kidney cancer and what signs, symptoms, and precautions to take to stay on top of this issue and your kidney health. Featuring RMC expert Dr. Pavlos Msaouel

Girls chat! In honor of Women's History Month, we're talking about women's reproductive health and advocacy with sickle cell advocate Teonna Woolford, founder of SC-RED.

An important discussion on the racial disparities individuals living with sickle cell disease face within the U.S. healthcare system. This episode features hematologist-oncologist physician and activist Dr. Ahmar Zaidi.

Happy holidays! Stephen and Cass have a list of questions to ask each other. Tune in to learn more about their personal lives, philosophies on sickle cell, and their deep dark secrets (haha).

Girl chat! Fashion model and sickle cell warrior London Knight shares how she juggles being a model, advocate and inspiration to others. 💋💃🏽 You can follow London Knight on Instagram at @LondonKnight_