Out of Patients with Matthew Zachary Matthew Zachary Worldwide

More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the vulnerable spaces of what it means to provide care for a loved one. Host Elura Nanos uses her no-BS conversational style to provide a home for the often unspoken thoughts and feelings of the caregiver experience. As a fiercely intelligent and radically compassionate lawyer and media professional, she knows the caregiver path all too well.




This episode discusses the moment of hearing about a loved one’s CLL diagnosis, the daunting task of navigating insurance and the healthcare system, and the necessity of finding and building your support network. Our host, Elura Nanos, talks with Lisa Ferguson, a communications director and mother of two from Huntsville, Alabama, and Erin O’Brien, a project manager from Cincinnati, Ohio. Lisa’s husband and Erin’s mom have CLL. In sharing their stories, they discuss their struggles and challenges and the importance of building your support network. Lisa and Erin begin our conversation as strangers, but they become each other’s “people by the end.”

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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 THREE

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) 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.

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 ONE

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 the Sickle Cell Disease Association of America, explains what SCD is and how it works. 

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As an epilogue to the pilot episode of Not Expecting, Matthew welcomes Ann Scalia (Director, Clinical Education for Alliance RX Walgreens Pharmacy) and Ashley McClure-Wolfson (Manager or Clinical Program Development Walgreens) for an in-person roundtable conversation and recap discussion. What is "Right to Parenthood in 2024?" What's new in the world of oncofertility? How does our understanding of gender identity factor into policies and programs? All this and more are coming up.




Thank you, Walgreens, for sponsoring this episode

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The Centers for Disease Control and Prevention estimate that nearly one in every eight couples struggles to conceive. Even today, infertility remains a societal taboo to the extent that more than 60% of prospective mothers said they hid their infertility from family and friends, and nearly half didn't even tell their mothers. 




All people challenged in their family-building journey should be empowered by knowledge, supported by the community, and offered an equitable and affordable path to biological parenthood.




Not Expecting is a single-episode pilot audio series about the invisible heroes who—united by advocacy and inspired to act— have fought for better treatment, forced the medical establishment to evolve, destigmatized cultural perceptions, and pressured lawmakers across the country to guarantee rights to treat the illness preventing parenthood.




Thank you Walgreens for sponsoring this miniseries.

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