SCD Stories

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 cel...

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 poten...

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 misundersta...

Hope and Destiny is available at: https://www.amazon.com/ https://hpcinternationalinc.com/bookstore Lewis Hsu co-authored "Hope & Destiny" with Allan Platt Jr. and James Eckman. The book aims to provide comprehensive education about sickle cell disease and accurate information about treatment regimens, medications, and medical insights to help patients and their loved ones cope with the physical,...

Destiny Van Sciver is the author of "Sickle Cell Superheroes" and a mother of a child with Sickle Cell Disease. She wants her book to empower people with the disease to live a good quality life and be the superhero of their own story. After her child had a negative experience at school, she donated books to the school. Her book is available on Amazon or the Hilton Publishing Co. website. She hopes...

Hilton Publishing Co. specializes in health-related content. They collaborated with doctors to publish their first book on Sickle Cell Disease called "Hope & Destiny." The company has since published several other books on Sickle Cell Disease. Their mission is to make these books available to patients through medical providers and hospitals. Interested parties can visit the company's website or em...

Synopsis: In this episode, host Dwayne Golden speaks with sickle cell warrior and advocate Shyala Pelmon about what it means to live well with sickle cell disease. Charlotte shares her perspective on the importance of taking care of oneself through regular doctor visits, medication, and self-care practices, while also accepting and being at peace with the reality of having a chronic and painful di...

Dwayne Golden interviews Sickle Cell Disease advocate and patient, Michelle Par Michelle shares her experiences growing up with Sickle Cell Disease and feeling different from her peers The difficulty of getting others to understand the severity of her pain and the importance of having a support system in place Michelle emphasizes the need to maintain a positive mindset and seek out support from fa...

Erica Whitherspoon talks about her experience living with Sickle Cell on the SCD Stories podcast. Her parents didn't know much about the illness She was not able to do things like swimming in a cold pool and was always labeled as "the sick one." With the help of three supportive friends, she got through her teenage years. Erica feared being misjudged if she told people about her condition. In 2022...

Elle is a recipient of a Bronze Congressional Award and has been featured on NPR, ABC 7, BBC World Service Radio, and a guest on many podcasts. She is a writer, motivational speaker, and social media strategist. CleverlyChanging.com and the Cleverly Changing podcast are a go-to resource on health, wellness, finances, and parenting. She is also a passionate storyteller. She holds a B.A. degree in E...

Toneisha Harris was the first African American female to make it as far as she did on NBC's The Voice, and is releasing a new single called “Let’s Change The World”.  Toneisha has a message of encouragement for individuals and families of the sickle community.

Debra is one of only a few assigned social workers for an agency in the commonwealth of Pennsylvania since most agencies use rotating social workers at clinics and hospitals.

Twaina and her son have dealt with the secondary and tertiary effects of Sickle Cell Disease and have had countless procedures since he was a child and are not allowing that to stop him from living his life.

Shalawn and Jerrick have dealt with the secondary and tertiary effects of Sickle Cell Disease and have had countless strokes since he was a child and are not allowing that to stop him from living his life.

The Williams family is a family of 5 and they unite together as advocates to fight not only against Sickle Cell Disease, but also on behalf of any and all under represented health communities.

Tristan who has dealt with the secondary and tertiary effects of Sickle Cell Disease has had countless strokes since he was a child and is not allowing that to stop him from living his life to the fullest.

Ronald Johnson is a member of the Board of Directors of the South Central PA Sickle Cell Council and the caregiver for his mother.  Ronald is the only child in his family with Sickle Cell Disease and 2 of his siblings have the trait.

Sickle Cell Disease is the leading hereditary blood disease in the nation but one of the least funded diseases.   In order to bring the proper funding, support and attention to this disease we launched this podcast to increase awareness to ensure that even at the local support that will influence the national support from  national community leaders.    We  interview each week individuals and fami...