Blood, Sweat, Cells: Real Talk About Sickle Cell Disease

Valerie Bey
  • 5.0 (2)
  • Health & Fitness
  • Updated Semimonthly

Join us for an engaging, informative, and supportive journey as we explore the realities, breakthroughs, and triumphs of living with sickle cell disease. Our podcast is dedicated to creating an awareness about this condition while also advocating for patients' rights and seeking solutions to improve their quality of life. Subscribe now to stay informed!

  1. May 8

    Because Mental Health is Health

    Mental health is an essential part of living well with a chronic illness, yet it is often overlooked in conversations about sickle cell disease. In this episode of Blood, Sweat & Cells: Real Talk About Sickle Cell Disease, host Valerie Bey speaks with Dr. Robyn Mehlenbeck, Director of the George Mason University Center for Community Mental Health and Professor in the Department of Psychology at George Mason University, along with Michelle L. Harlan, a Clinical Psychology doctoral student at George Mason University who is pursuing a career in mental health while also living with sickle cell disease herself. Together, they discuss the emotional impact of chronic illness, the connection between mental and physical health, coping with anxiety and isolation, and the importance of accessible mental health support for individuals and families affected by sickle cell disease. This conversation offers practical resources, encouragement, and hope for anyone navigating the challenges of chronic illness, caregiving, and mental wellness. To learn more about the George Mason University Center for Community Mental Health, visit: ccmh.gmu.edu Support & Mental Health Resources Stepped Mental Health Care Program Build coping skills that feel practical and supportive Includes three telehealth sessions from the comfort of home Low-cost services available to anyone in Virginia Free for Mason affiliates and Prince William County residents Call: 703-993-1370 Additional Services Available Individual therapy for children, teens, and adults Group therapy for teens and adults Medication management Psychoeducational assessments Specialized services for veterans English- and Spanish-speaking support options FREE Emotional Support Lines English Support Line 703-215-1898 Available 8:30 AM–8:30 PM, 7 days a week Spanish Support Line 703-914-3878 Available 8:00 AM–8:00 PM, 7 days a week

    Because Mental Health is Health

  2. Mar 16

    Sickle Cell Retinopathy

    Many people living with sickle cell disease understandably focus on pain crises, blood complications, and organ health. However, eye health is another important part of overall care that is often overlooked. Vision complications related to sickle cell disease can develop quietly, sometimes without noticeable symptoms, and if left undetected, may lead to permanent vision loss. In this episode of Blood, Sweat & Cells: Real Talk About Sickle Cell Disease, host Valerie Bey speaks with Dr. Adrienne W. Scott, retina specialist and Fred M. Leader Family Retina Professor of Ophthalmology at the Wilmer Eye Institute at Johns Hopkins. Dr. Scott explains how sickle cell disease can affect the retina, why eye damage often develops without symptoms, and why routine dilated retinal exams are critical for early detection and prevention of vision loss. Listeners will learn: What sickle cell retinopathy is and how it develops Why vision problems may occur without warning signs What symptoms should never be ignored How screening and early treatment can prevent serious complications Why eye care should be part of lifelong sickle cell management If you or someone you love lives with sickle cell disease, this episode offers essential guidance on protecting vision and maintaining long-term eye health.  Where to Go: Johns Hopkins Wilmer Eye Institute https://www.hopkinsmedicine.org/wilmer/ Retina Group of Washington has locations across the Washington, DC metropolitan area. Retina Specialist Ophthalmologists | RGW | Eye Surgeons & Doctors MD VA DC https://www.rgw.com Patient Resource: Sickle Cell & Eye Health Download handout: https://tinyurl.com/4x943tp7

    Sickle Cell Retinopathy

  3. Mar 8

    Gene Therapy & Sickle Cell Disease: What Families Need to Know

    Blood Sweat and Cells:  Gene Therapy & Sickle Cell Disease: What Families Need to Know Gene therapy is emerging as a powerful treatment option for people living with sickle cell disease, but with innovation comes important questions about safety, access, cost, and trust. In this episode of Blood, Sweat & Cells: Real Talk About Sickle Cell Disease, host Valerie Bey sits down with Sheri Reed, Patient and Community Educator at Genetix Biotherapeutics, for a plain-language education for individuals and families affected by all forms of sickle cell disease, including HbSS, HbSC, HbS beta-thalassemia, and related variants.  Together, they explore what gene therapy is (and what it isn't), how the treatment process works, what long-term monitoring looks like, and how Medicaid coverage and outcomes-based payment models are being discussed to improve access — especially for underserved communities. This episode is designed to help individuals and families ask informed questions, understand their options, and make decisions that feel right for them. 🎧 This episode is for educational purposes only and does not replace medical or insurance advice. Trusted Resources for Learning More about Gene Therapy Centers for Medicare & Medicaid Services (CMS): Medicaid coverage and policy https://www.cms.gov/priorities/innovation/innovation-models/cgt National Institutes of Health (NIH): Genome Research Institute https://www.genome.gov/research-at-nhgri/Projects/Democratizing-Education/navigating-sickle-cell-disease-gene-therapy American Society of Hematology (ASH): Patient education on sickle cell treatments https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/sickle-cell-disease-guidelines  "Gene Therapy & Medicaid: What Families Should Know" handout and trusted educational resources link - https://heartogold.org/uncategorized/gene-therapy-medicaid/ Patient Support Therapy: www.genetixpatientsupport.com  Gene Therapy in SCD: https://www.sparksicklecellchange.com/treatment/sickle-cell-gene-therapy Genetix Biotherapeutics: https://www.genetixbiotx.com/

    Gene Therapy & Sickle Cell Disease: What Families Need to Know

  4. Jan 15

    Dental Care & Sickle Cell: What You Need to Know

    Dental care is often overlooked—but for people living with sickle cell disease or carrying the sickle cell trait, it can be a critical part of staying healthy and preventing serious complications. In this powerful and eye-opening episode of Blood, Sweat, and Cells: Real Talk About Sickle Cell Disease, host Valerie Pearson Bey sits down with Linda Chandler Jacobs, registered dental hygienist, educator, advocate, and founder of The Potter's Smile, the only 501(c)(3) dental practice in the U.S. dedicated to serving patients with sickle cell disease and sickle cell trait. With more than 50 years of experience—and lived experience as someone who carries the sickle cell trait herself—Linda explains how oral health is deeply connected to overall health. She shares why hydration, infection prevention, medication disclosure, and coordination with hematologists are essential; why extractions and implants can pose serious risks; and why patients must advocate for themselves by informing and even interviewing their dental providers. This episode is a must-listen for sickle cell warriors, caregivers, and healthcare professionals who want to understand how informed dental care can help prevent pain crises, infections, and long-term complications. 🎧 Tune in to learn how protecting your smile can help protect your whole body—and why dental knowledge can be lifesaving. For information about The Potter's Smile or to send them an email with questions about dental care for patients with sickle cell disease or the sickle cell trait.  visit https://www.thepotterssmile.org The Inova Adult Sickle Cell Center recommends The Nova Dental Clinic  novadentalclinic.org for persons living in Northern Virginia

    Dental Care & Sickle Cell: What You Need to Know

  5. 11/23/2025

    Food Safety 101 for the Holidays

    We all love a good holiday meal with turkey, sides, and sweet desserts — but for people with sickle cell disease or compromised immune systems, a foodborne illness can be far more than an inconvenience. It can be a serious health threat. I'm your host, Valerie Bey, board member with The Heart of Gold Sickle Cell Foundation of Northern Virginia. In this episode of Blood, Sweat & Cells: Real Talk About Sickle Cell Disease, I'm joined by Jodi King and Ian Armstrong, Environmental Health Specialists with the Fairfax County Health Department. Together, we break down why foodborne illness poses higher risks for people with sickle cell disease, especially during the busy holiday season. We'll explore the most common holiday food-safety pitfalls — buffets, leftovers, undercooked meats, dairy risks, cross-contamination — and share practical, actionable steps you can take right now to stay healthy and enjoy your celebrations without worry. Local Resource – Fairfax County Health Department For food-safety information, guidance on reporting suspected foodborne illness, and to view local inspection reports, visit: https://www.fairfaxcounty.gov/health/food Federal Resource – U.S. Food & Drug Administration (FDA) For national guidelines, education, and tips on safely buying, storing, preparing, and serving food — especially important for anyone at higher risk — visit: https://www.fda.gov/food

    Food Safety 101 for the Holidays

  6. 10/14/2025

    Tatyana's Half Match Journey

    From the series: Blood, Sweat & Cells: Real Talk About Sickle Cell Disease When Tatyana decided to stop her medication so she could have a child, she knew there would be risks. But nothing could have prepared her for the relentless pain that followed or the heartbreak of missing her baby's first milestones while fighting for her own life. In this deeply moving third episode of our special series on half-matched bone marrow transplants, we hear from Tatyana, a 30-year-old sickle cell warrior who refused to give up. From pregnancy complications and endless hospital stays to a life-changing decision made from her hospital bed, Tatyana opens up about her emotional journey toward healing and the day her younger brother became her half-match donor. This is a story of a mother's love, a family's strength, and a medical breakthrough offering hope to thousands living with sickle cell disease. For anyone who'd like to learn more about this procedure, you can visit https://www.hopkinsmedicine.org/transplant/programs/bone-marrow

    Tatyana's Half Match Journey

  7. 08/30/2025

    Cure No Longer Out of Reach: Half-Match Bone Marrow Transplant

    On this episode of Blood, Sweat, and Cells, host Valerie Bey sits down with Dr. Robert Brodsky from Johns Hopkins to talk about a groundbreaking half-matched bone marrow transplant, opening the door to cures for more sickle cell patients than ever before. Learn how this breakthrough procedure compares to gene therapy and what it means for the future treatment of patients with sickle cell disease. For anyone who'd like to learn more about this procedure, you can visit https://www.hopkinsmedicine.org/transplant/programs/bone-marrow

    Cure No Longer Out of Reach: Half-Match Bone Marrow Transplant

  8. 08/18/2025

    Half-Matched Bone Marrow Transplant: KeAndra's Story

    Born with sickle cell disease, KeAndra Hickman endured years of painful crises, countless hospital stays, and constant uncertainty about her future. Then she discovered a groundbreaking option—a half-matched bone marrow transplant—and decided to take the leap. In this episode of Blood, Sweat, and Cells, host Valerie Bey sits down with KeAndra for a powerful and deeply personal conversation about the highs, lows, and ultimately life-changing outcome of her transplant journey. Most people with sickle cell disease will never find a perfectly matched bone marrow donor. But the good news is that almost everyone has a half-match. KeAndra shares how her successful transplant at Johns Hopkins, under the care of Dr. Robert Brodsky, transformed her life—and why this option could bring hope to so many others living with SCD. If you'd like to learn more about this procedure, visit hopkinsmedicine.org/transplant/programs/bone-marrow. And stay tuned for a future episode featuring Dr. Robert Brodsky himself, where he'll discuss the latest research and explain who makes the best candidates for a half-matched bone marrow transplant.

    Half-Matched Bone Marrow Transplant: KeAndra's Story
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Join us for an engaging, informative, and supportive journey as we explore the realities, breakthroughs, and triumphs of living with sickle cell disease. Our podcast is dedicated to creating an awareness about this condition while also advocating for patients' rights and seeking solutions to improve their quality of life. Subscribe now to stay informed!

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