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

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 [https://www.gmu.edu/?utm_source=chatgpt.com], 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 [https://ccmh.gmu.edu/?utm_source=chatgpt.com] 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

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/ [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 [https://www.rgw.com] Patient Resource: Sickle Cell & Eye Health Download handout: https://tinyurl.com/4x943tp7 [https://tinyurl.com/4x943tp7]

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 [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 [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 [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/ [https://heartogold.org/uncategorized/gene-therapy-medicaid/] Patient Support Therapy: www.genetixpatientsupport.com [http://www.genetixpatientsupport.com/] Gene Therapy in SCD: https://www.sparksicklecellchange.com/treatment/sickle-cell-gene-therapy [https://www.sparksicklecellchange.com/treatment/sickle-cell-gene-therapy] Genetix Biotherapeutics: https://www.genetixbiotx.com/ [https://www.genetixbiotx.com/]

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 [https://www.thepotterssmile.org] The Inova Adult Sickle Cell Center recommends The Nova Dental Clinic novadentalclinic.org [https://www.novadentalclinic.org/] for persons living in Northern Virginia

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 [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 [https://www.fda.gov/food]