[HIATUS] THE SICKLE: Building a Support System with Sickle Cell Disease (Episode Two)

Out of Patients with Matthew Zachary

Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts the quality of life for many patients in the form of depression, anxiety, executive function, and more. In partnership with The Sickle Cell Disease Association of America, Matthew Zachary Worldwide presents “The Sickle,” a three-part limited series for patients and caregivers. In each episode, you’ll 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 people with SCD live with and what we can do to improve them.

EPISODE TWO

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.

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