SCD Stories South Central PA Sickle Cell Council, Dwayne Golden

In this episode of SCD Stories, Dwayne Golden talks with Maria Mendoza, a parent and sickle cell disease advocate for her children and other families with SCD children. Maria's children, Luis and Andrea, both have SCD, and she stresses the importance of communicating with their teachers about their condition. She also highlights the lack of education and awareness about sickle cell disease, particularly among Latinos and other ethnicities, which can lead to the loss of dignity for the child and challenges in navigating school systems. Maria emphasizes the need for advocacy and education to support those affected by sickle cell disease.

In this episode of the SCD Stories podcast, the guest, Allan Pratt, talks about his book "Hope and Destiny," which aims to educate patients, families, and clinicians about sickle cell disease. The book was inspired by a lack of services for sickle cell patients in 1985, and Pratt, who is also the Director of Admissions for Emory University's preventative medicine PA department, got involved as a physician assistant at the 24-hour sickle cell unit that was established at Grady Hospital. The speakers discuss the importance of education about sickle cell disease, advancements in medical treatments, and the role of nurse practitioners and physician assistants in improving patient care. They recommend resources for physicians who want to learn more about sickle cell disease and emphasize the importance of genetic testing to know one's status regardless of skin color. The stigma surrounding sickle cell disease should be looked past, and proper education and understanding should be promoted.

On this Episode Dwayne talks with Lewis Hsu, M.D., Ph.D. Co-author of "Hope & Destiny,": The Patient and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait along with Allan F. Platt Jr. P.A.-C. M.M.Sc., James Eckman M.D.

Dr. Lewis Hsu discusses the revised edition of "Hope & Destiny," a book series that aims to provide comprehensive education about sickle cell disease and accurate information on treatment. The authors wanted to use plain language and voice the stories of individuals with sickle cell disease. The revised edition provides updated information on COVID-19's impact, pain management guidance, and new resources. The book series is trusted worldwide and has sold over 75,000 copies. The authors are also working on other literature about sickle cell trait and awareness, as progress in the field of sickle cell disease continues.

Destiny Van Sciver, the author of "Sickle Cell Superheroes" and a mother of a child with Sickle Cell Disease, shares her story on the SCD Stories podcast. She wants her book to empower people to live a good quality life despite their condition and be the superhero of their own story. After her child had a negative experience at school due to a lack of understanding about the disease, she donated books to the school. Her book is available on Amazon or the Hilton Publishing Co. website, and she hopes to get it into hematology clinics around the country. She emphasizes the importance of being tested for Sickle Cell and allowing children to collaborate in their care to learn how to advocate for themselves. Destiny's parents didn't know they carried the Sickle Cell trait because it wasn't tested for until the 90s.

Megan Lippert, the executive Vice President at the Hilton Publishing Co., talks about the company's niche in health-related content and their collaboration with Lewis Hsu, MD, PhD, James Eckman, MD, and Allan Platt, PA-C, MMSc to write their first book on Sickle Cell Disease called "Hope & Destiny." Hilton Publishing Co. through connections to like the Children's Sickle Cell Foundation and Andrea Matthews, has since published several other books on Sickle Cell Disease, such as "Sickle What?" by Lisa Rose and "Sickle Cell Heroes" by Destiny Van Sciver. The company's mission is to make these books available to patients through medical providers and hospitals. Those interested in publishing or purchasing the books can visit the company's website or email them directly.

In this episode of SCD Stories, Dwayne Golden has a conversation with Shyala Pelmon, a sickle cell warrior, about what it means to live well with sickle cell. They discuss the importance of taking care of oneself, going to doctor appointments, and accepting the chronic disease while still being at peace and finding happiness. Duane talks about his previous misunderstanding of the phrase "living well with sickle cell" and how he now understands that it means putting on a champion armor every day to live life with grace and love. Charlotte emphasizes the need for others to understand the disease and not to be judgmental, as sickle cell can be an invisible disease. She also mentions the importance of having good spirits even when not feeling well and the need for understanding from others. They conclude the episode by reminding listeners that pain tolerance varies from person to person and that everyone should strive to understand and support those living with sickle cell disease.