SCD Stories

Auteur(s): South Central PA Sickle Cell Council Dwayne Golden
  • Résumé

  • "SCD Stories" a podcast dedicated to amplifying the voices of individuals and families affected by Sickle Cell Disease and other health disparities. Each episode features powerful conversations with individuals who have experienced the challenges of living with Sickle Cell Disease firsthand, as well as experts in the field who are working to advance research, treatment, and care for those living with chronic illnesses and health disparities. Through these stories, we aim to shed light on the often-overlooked experiences of those living with Sickle Cell Disease and other health disparities, while also exploring strategies for resilience, self-advocacy, and community building. Join us on this journey as we seek to inspire hope, promote awareness, and cultivate empathy for those living with chronic illnesses and health disparities.
    2021 SCPASCC Community Stories Podcast
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Épisodes
  • The Marilyn Jackson Story
    Nov 10 2024

    Host: Dwayne Golden

    Guest: Marilyn Jackson, grandmother, vegan chef, and sickle cell disease advocate

    • Discussion on the prevalence of sickle cell disease globally and its limited awareness in the United States
    • Marilyn’s experience after her grandson's sickle cell diagnosis, and the medical journey that followed
    • The need for increased education and resources for families of children with sickle cell
    • Marilyn’s role in advocating for better care, proactive health strategies, and support for families
    • A look into Marilyn’s personal connection to sickle cell trait and her commitment to helping others navigate this condition
    • Invitation for other families to share their stories on SCD Stories
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    25 min
  • Maria Mendoza's Story
    May 5 2023
    • Guest: Maria Mendoza, a parent and sickle cell disease advocate for her children and other families with SCD children.
    • Maria has 2 children with SCD (Luis, 11 years old, and Andrea, 7 years old) and 1 with SCT.
    • Maria stresses the importance of communicating with her children's teachers about their SCD condition and advocating for their needs.
    • Lack of privacy, understanding from teachers, and potential bullying from classmates can all contribute to the loss of dignity for the child with SCD.
    • Education and awareness are crucial to ensure that employers, educators, and healthcare professionals are knowledgeable about the disease and can provide necessary support.
    • Sickle cell disease affects individuals from various ethnicities and backgrounds.
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    37 min
  • Hope & Destiny With Dr. Allan Platt
    Apr 28 2023
    • Allan Pratt is the author of "Hope and Destiny," a book about sickle cell disease that aims to educate patients, families, and clinicians about the disease.
    • The book was inspired by a lack of services for sickle cell patients in 1985 and was started by a mother who wanted to get a clinic started at Grady Hospital.
    • The lack of education about sickle cell disease in the past has led to a misunderstanding of the disease and its impact on patients.
    • The book "Hope and Destiny" serves as a tool for educating patients and families about the disease and has been successful in providing a baseline understanding of sickle cell disease.
    • The progress made in sickle cell disease education and treatment, as well as the role of physician assistants and nurse practitioners in improving patient care, is discussed.
    • The speakers emphasize the importance of patient communication and listening in healthcare, and how patients can become advocates for their own health.
    • The transition from pediatric care to adult care for sickle cell patients is challenging, and more resources are needed for adult sickle cell patients.
    • The speaker advises reaching out to the local sickle cell community service to find good doctors who are interested in managing sickle cell disease.
    • It is important to understand that sickle cell is not just a disease that affects black people, but a global genetic issue that can affect people of any background.
    • The stigma surrounding sickle cell should be looked past, and proper education and understanding should be promoted.
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    33 min

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