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 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

• 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.

• 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 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, 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 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/9780977316021

https://www.amazon.com/Sickle-Cell-Superheroes-Destiny-Sciver/dp/0977316025

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 email them directly.

email: [email protected] for anyone that is interested in being published or looking for the books.

website: www.hpcinternationalinc.com

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 disease. She emphasizes the importance of channeling pain into positivity and being kind to others, even when in pain.

Dwayne and Charlotte discuss the challenges of living with sickle cell disease, including the need to put on a brave face and continue with everyday life even when in pain. Charlotte reminds viewers that living well with sickle cell disease also means having others understand and be empathetic towards the challenges and limitations that come with the disease.

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 family or support groups

Challenges of navigating work, school, motherhood, and relationships while living with Sickle Cell Disease

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 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, 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 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 English and History.