SCD Stories

The Marilyn Jackson Story

Host: Dwayne GoldenGuest: Marilyn Jackson, grandmother, vegan chef, and sickle cell disease advocateDiscussion on the prevalence of sickle cell disease globally and its limited awareness in the United StatesMarilyn’s experience after her grandson's sickle cell diagnosis, and the medical journey that followedThe need for increased education and resources for families of children with sickle cellMarilyn’s role in advocating for better care, proactive health strategies, and support for familiesA look into Marilyn’s personal connection to sickle cell trait and her commitment to helping others navigate this conditionInvitation for other families to share their stories on SCD Stories

Maria Mendoza's Story

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.

Hope & Destiny With Dr. Allan Platt

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.

Hope And Destiny With Dr. Lewis L. Hsu

Hope and Destiny is available at:https://www.amazon.com/https://hpcinternationalinc.com/bookstoreLewis 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, emotional, and psychological distress caused by SCD.The revised edition provides updated information on sickle cell disease, including COVID-19's impact on the disease, pain management guidance, and new resources available to patients, parents, and caregivers.The book series is trusted by patients, caregivers, healthcare professionals, and students around the world and has sold over 75,000 copies since its first publication.The authors wanted to use plain language for the public and voice the stories of individuals with sickle cell disease.The authors are also working on other literature on sickle cell trait and awareness.Progress in the field of sickle cell disease continues to be made.

Destiny Van Sciver

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 to get her book into hematology clinics around the country.She emphasizes the importance of being tested for Sickle Cell and allowing children to collaborate in their care.Her parents didn't know they carried the Sickle Cell trait because it wasn't tested for until the 90s.Find the book by clicking the links bellow:https://hpcinternationalinc.com/Bookstore/Product/9780977316021https://www.amazon.com/Sickle-Cell-Superheroes-Destiny-Sciver/dp/0977316025