Living with Sickle Cell Disease

Fighting Medical Disparities with Sickle Cell Disease

Sickle cell disease (SCD) is the most common blood disorder worldwide. About 7 million people have been diagnosed with SCD, and about 100 million people have sickle cell trait. Around 300,000 babies are born with SCD each year. For a rare disease, SCD is quite common, yet patients with SCD are still facing discrimination from funders, researchers, and medical professionals. Still, today, medical professionals are not thoroughly educated on how painful living with SCD can be. In this episode, Joel Helle, vice president of physician services at CVS Health, explains how medical professionals are still behind on SCD awareness. Ahmar Zaidi, SCD advocate and medical director at Agios Pharmaceuticals, talks about his experience as a medical professional working with SCD patients. Our previous guests, Dr. Lewis Hsu, Justina Williams, Dr. Carolyn Rowley, and Andre Harris, talk about the discrimination SCD patients face and how we can help end it. CLIP SOURCES Don Lemon on Floyd arrest: This is how long 9:29 feels like [https://www.youtube.com/watch?v=2qNShtN5BTE] Black Lives Matter protesters stage marches around the world [https://www.youtube.com/watch?v=oWOoFLhrF28] George Floyd killing sparks worldwide protests against racism | DW News [https://www.youtube.com/watch?v=3V4LFDtKrV0&t=253s] 'I can't breathe!' Large crowd of protesters marches and chants through downtown Lexington [https://www.youtube.com/watch?v=3V4LFDtKrV0&t=253s] Worldwide protests honor George Floyd and Black Lives Matter in defiance of coronavirus fears [https://www.youtube.com/watch?v=9f6Rco-2icA&t=46s] NHS sickle cell patients face barriers to new treatment [https://www.youtube.com/watch?v=KMl9tkc8ICo] #sicklecelldisease #paincrisis #racism *Tips to Get Better Care while in the hospital* [https://youtu.be/cWbLlzfxCH8] MUSIC Imbre-jordan-critz-musicbed-licensed Evergreen-blake-ewing-musicbed-licensed Open-waters-instrumental-lael-musicbed Ignition-why-we-wander-musicbed-licensed A-bed-for-a-sobering-monologue-in-f-aural-method-musicbed-licensed Familiar-patterns-async-ross-musicbed-licensed 742-am-lowercase-noises-remix-hotel-neon-musicbed-licensed thanksgiving-sam-ock-musicbed prehistoria-uncle-skeleton-musicbed tell-me-slo-loris-musicbed See Privacy Policy at https://art19.com/privacy [https://art19.com/privacy] and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info [https://art19.com/privacy#do-not-sell-my-info].

Building a Support System with Sickle Cell Disease

Sickle Cell Disease (SCD) is often called an invisible illness; people can't see the excruciating pain. When living with SCD, advocacy becomes crucial as patients inform teachers, employers, medical doctors, and friends of their condition. A pain crisis can put an SCD patient out of work or school or land them in the hospital where medical professionals are unaware of the severity of their pain. Moving through the world with an invisible illness is a trying task for an already exhausted patient. This is why having a solid support system, either with family or through an organization, is crucial. In this episode, we meet Justina Williams, Patient Engagement Coordinator with Piedmont Health Services and Sickle Cell Agency. She shares her story about how living with SCD has led her to her current role. We also meet Dr. Carolyn Rowley, executive director and founder of Cayenne Wellness Center and Children's Foundation. Cayenne Wellness is a non-profit organization that allocates resources to SCD patients in California. Patients can receive housing and transportation and even have an advocate for them when going to emergency rooms. Dr. Rowley tells the story of her early life with SCD in the 60's and what led her to found the non-profit.  For more information about this series, visit http://thesicklepodcast.com. CLIP SOURCES Sharon Rose [https://twitter.com/SRNFN_/status/1459543200398557190?s=20&t=iwPui3q2ABgVvm10P6Q6ig] MUSIC into-daylight-gavin-brivik-musicbed on-the-banks-dustin-lau-musicbed Tenderness-tony-anderson-musicbed Constant-meditatiion-instrumental-kollen-musicbed-licensed aura-strings-version-instrumental-shawn-williams-musicbed Oliver-no-oohs-ahhs-instrumental-zachary-david-musicbed starry-night-jordan-critz-musicbed-licensed as-a-cloud-kino-musicbed See Privacy Policy at https://art19.com/privacy [https://art19.com/privacy] and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info [https://art19.com/privacy#do-not-sell-my-info].

Living with Sickle Cell Disease

Andre Harris is a 32-year-old Ph.D. student residing in Houston, Texas. He’s currently working on a doctorate in social work. Andre is the first graduate student in his family to make this academic achievement, but his road to higher education was not a smooth one. Andre has lived with chronic pain since he was a child. From strokes to pain crises, he has lived with a disease that can interrupt the flow of life. These symptoms are due to sickle cell disease (SCD), a group of genetic blood conditions that affect about 100,000 people in the U.S. In this episode, Andre talks about his earliest memories of living with SCD and the needs of the most vulnerable SCD patients. Dr. Lewis Hsu, a pediatric hematologist at the University Of Illinois Chicago and Sickle Cell Disease Association of America, explains what SCD is and how it works. For more information about this series, please visit http://thesicklepodcast.com. CLIP SOURCES NHS sickle cell patients face barriers to new treatment [https://www.youtube.com/watch?v=KMl9tkc8ICo] The History of the Sickle-Shaped Cell - Sickle Cell Disease: A Lethal Advantage (1/5) [https://www.youtube.com/watch?v=3w-w8F-2GRo] Freda Lewis-Hall and TLC's "T-Boz" Discuss Sickle Cell Disease on The Doctors [https://www.youtube.com/watch?v=EktxevGQ_MQ] Living with Sickle Cell Disease- Personal Stories [https://www.youtube.com/watch?v=yCOvkOCaaSk] What is Ogbanje? - Igbo Mythology [https://www.youtube.com/watch?v=MUlWnslBgU0] Can CRISPR cure Sickle-cell Disease? [https://www.youtube.com/watch?v=mQ8Ola_C5po&t=67s] MUSIC Heroes-alicia-enstrom-musicbed new-heroes-will-patterson-musicbed Score 1 by Brieana Sealy sand-between-our-toes-tim-mann-musicbed Searchlight-nick-box-musicbed Pages-sun-rain-musicbed elsewhere-hammock-musicbed-licensed air-like-perfume-coldbrew-musicbed-licensed See Privacy Policy at https://art19.com/privacy [https://art19.com/privacy] and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info [https://art19.com/privacy#do-not-sell-my-info].

Introducing: The Sickle

Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts many patients' quality of life in depression, anxiety, executive function, and more. With thanks in part to Bluebird Bio [https://www.bluebirdbio.com/] for making this series possible, and in partnership with The Sickle Cell Disease Association of America [https://www.sicklecelldisease.org/], OffScrip Health presents "The Sickle," a three-part limited series for patients, caregivers, and community members facing the disease. Throughout each episode, you will hear from the people living with SCD and experts who work every day to improve their lives. We'll learn about the lifelong care, interpersonal relationships, and medical disparities that people with SCD live with and what we can do to improve them. Subscribe today and follow this series wherever you get your podcasts. See Privacy Policy at https://art19.com/privacy [https://art19.com/privacy] and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info [https://art19.com/privacy#do-not-sell-my-info].