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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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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Testing Our Patients is a limited discussion series about how the sausage is made when bringing life-saving diagnostic tests and breakthrough medicines to cancer patients in desperate need of hope. In this episode, we welcome Dr.Rafael Fonseca (Chief Innovation Officer at Mayo Clinic in Arizona) and Dr.Ola Landgren (Chief of the Myeloma Program and the Experimental Therapeutics Program at Sylvester Comprehensive Cancer Center at the University of Miami) in an examination of the role that doctors have advocating for MRD testing and expanding the role of diagnostics in cancer treatments.

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Testing Our Patients is a limited discussion series about how the sausage is made when bringing life-saving diagnostic tests and breakthrough medicines to cancer patients in desperate need of hope. In this episode, we welcome Allison Silverman, CEO of Stupid Cancer, and Lizette Figueroa, Senior Director of Education & Support at The Leukemia & Lymphoma Society, to discuss their work as patient advocates to get MRD testing the patients who need most. Diverse schools of thought often collide between the risk/reward of rushing approvals too soon vs. the patient advocates who decry, "What's taking so long? We just want to live."

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Finding your voice while navigating a cancer diagnosis is not always easy, but self-advocacy can be a game changer. Advocating for education, research, and funding can drastically change outcomes, and often, it is the voices of those who have experienced health disparities first-hand that impact institutional change. Follow the stories of Montessa Lee, Rayanne Lehman, and Maida Mangiameli as they share moments of strength, wisdom, and advocacy from their journeys with Small Cell Lung Cancer. While there is still no cure for SCLC, there are new screenings and treatments and new reasons to be hopeful.

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“Get your affairs in order” was the advice from one ER doctor to Rayanne Lehman upon seeing her chest X-Ray. That was 4 years ago. When Maida Mangiameli received her Small Cell Lung Cancer diagnosis she wanted to live to know her newborn grandchild and that child is now 6 years old. And for patient Montessa Lee, her Small Cell Lung Cancer (SCLC) diagnosis 16 years ago has led her to a lifetime of advocacy work for lung cancer research, funding and education along with a commitment to being a voice for the voiceless. These lung cancer success stories are not only hopeful but through their journeys, these three patients and their caregivers have gathered a wealth of information and insight to share with others.

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In this series finale, we meet Maimah Karmo, President and CEO of the Tigerlily Foundation, and learn about her journey to end disparities for young breast cancer patients of color. If you like this series, be sure to subscribe, leave a rating a review, share on social media, and please tell your community to check it out.

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In this episode, we meet breast cancer advocates and users of #BCSM, Liza Bernstein, Anne Marie Mercurio, Christine Hodgdon, and Julia Maues. We find out how they got involved in #BCSM and how they utilized the hashtag to further their advocacy. If you like this series, be sure to subscribe, leave a rating, a review, share on social media, and please tell your community to check it out

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Breast Cancer Social Media (#BCSM) is an online community dedicated to empowering those affected by breast cancer. #BCSM began in 2011 as a conversation on Twitter and has grown into a world of support, guidance, and reliable information. In this episode, we meet breast cancer survivors and co-moderators of #BCSM, Alicia Staley and Jody Schoger. We also find out how Dr. Deanna Attai got involved in the online patient community.

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