SCD Stories

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.

In this episode of "SCD Stories," Dwayne Golden interviews Michelle Par, a Sickle Cell Disease advocate and patient. Michelle shares her experiences growing up with Sickle Cell Disease, including the challenges of feeling different from her peers and the difficulty of getting others to understand the severity of her pain. Michelle emphasizes the importance of having a support system in place, whether it be family or support groups, and maintaining a positive mindset. She also discusses the challenges of navigating work, school, motherhood, and relationships while living with Sickle Cell Disease. Overall, Michelle's message is one of resilience and hope, encouraging others to stay positive and seek out support in their own journey with Sickle Cell Disease.

Erica Whitherspoon shares her experience living with Sickle Cell on the SCD Stories podcast. Growing up, her parents didn't know much about the illness. She couldn't do things like swimming in a cold pool and was always labeled as "the sick one," which made her feel different from other kids. However, she got through her teenage years with the help of three supportive friends. Erica feared being misjudged if she told people about her condition. In 2022, she spent several months in the hospital in crisis, missing most of the summer. Despite this, she advocates for sickle cell awareness everywhere and wears her sickle cell badge with pride. Erica is an overachiever, persevering, and serving her community.

Elle Cole is a mom of twin daughters, one of whom is living with Sickle Cell Anemia. She serves as a health advocate for Sickle Cell Disease and Type 1 Diabetes. She is an ambassador for St. Jude Children’s Research Hospital. And raises awareness about Sickle Cell Disorders to help make the quality of life for people living with genetic disorders and autoimmune diseases better.

The Toneisha Harris story is a story of what it means to be a Parent and advocate for her son who battled Leukemia for some 8 years. Toneisha is a super mom that has a message to the sickle cell community, a message of encouragement to give strength during the fight.