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.

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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.

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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.

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