https://simplecast.com SCD Stories "SCD Stories" a podcast dedicated to amplifying the voices of individuals and families affected by Sickle Cell Disease and other health disparities. Each episode features powerful conversations with individuals who have experienced the challenges of living with Sickle Cell Disease firsthand, as well as experts in the field who are working to advance research, treatment, and care for those living with chronic illnesses and health disparities. Through these stories, we aim to shed light on the often-overlooked experiences of those living with Sickle Cell Disease and other health disparities, while also exploring strategies for resilience, self-advocacy, and community building. Join us on this journey as we seek to inspire hope, promote awareness, and cultivate empathy for those living with chronic illnesses and health disparities. 2021 SCPASCC Community Stories Podcast en Sun, 10 Nov 2024 16:30:00 +0000 Sun, 10 Nov 2024 16:30:11 +0000 https://www.SCPASCC.org SCD Stories https://image.simplecastcdn.com/images/2dfb664a-6bfc-4f22-811e-f7fce0ff3d7e/dd9bae31-8a8a-4be9-b79b-e639ff0e4e20/3000x3000/scd-stories-logos.jpg?aid=rss_feed https://www.SCPASCC.org episodic "SCD Stories" a podcast dedicated to amplifying the voices of individuals and families affected by Sickle Cell Disease and other health disparities. Each episode features powerful conversations with individuals who have experienced the challenges of living with Sickle Cell Disease firsthand, as well as experts in the field who are working to advance research, treatment, and care for those living with chronic illnesses and health disparities. Through these stories, we aim to shed light on the often-overlooked experiences of those living with Sickle Cell Disease and other health disparities, while also exploring strategies for resilience, self-advocacy, and community building. Join us on this journey as we seek to inspire hope, promote awareness, and cultivate empathy for those living with chronic illnesses and health disparities. South Central PA Sickle Cell Council, Dwayne Golden false https://feeds.simplecast.com/XXHPst1L sicklecelldisease, sicklecelljourney, sicklecellwarrior, sicklecellsurvivor, sicklecellstrong, sicklecellhealth, council, sicklecellmums, sicklecellanemia, sicklecellwarriors, paindiator, sicklecell, sicklecellawareness, sicklecellunite, sicklecelladvocate, dwayne golden, scpascc, sicklecelldisorder, sicklecelleducation, sicklecellsoldier, sickler, sicklecellfacts, sicklecellfamily, sicklecellfighter, sicklecellmatters, sicklecellprincess, sicklecelltrait Dwayne Golden | SCPASCC dgolden@scpascc.org a5ce3f21-5ff6-4365-9dc8-82f2e19ce1e3 The Marilyn Jackson Story 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
]]> Sun, 10 Nov 2024 16:30:00 +0000 dgolden@scpascc.org (Marilyn Jackson, Dwayne Golden) https://www.SCPASCC.org 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
]]> The Marilyn Jackson Story Marilyn Jackson, Dwayne Golden 00:25:09 In this heartfelt episode of SCD Stories, Dwayne Golden speaks with Marilyn Jackson, a devoted grandmother, vegan chef, and sickle cell disease advocate. Marilyn shares her powerful journey supporting her young grandson, who was diagnosed with sickle cell disease just weeks after birth. She discusses the challenges her family has faced, the lack of adequate information for caregivers, and her mission to educate herself and others about the disease. Through her story, Marilyn emphasizes the importance of community support, education, and proactive health management. This episode sheds light on the impact of sickle cell disease and highlights the dedication of families who advocate tirelessly for their loved ones. In this heartfelt episode of SCD Stories, Dwayne Golden speaks with Marilyn Jackson, a devoted grandmother, vegan chef, and sickle cell disease advocate. Marilyn shares her powerful journey supporting her young grandson, who was diagnosed with sickle cell disease just weeks after birth. She discusses the challenges her family has faced, the lack of adequate information for caregivers, and her mission to educate herself and others about the disease. Through her story, Marilyn emphasizes the importance of community support, education, and proactive health management. This episode sheds light on the impact of sickle cell disease and highlights the dedication of families who advocate tirelessly for their loved ones. managing sickle cell pain and health, sickle cell disease advocacy, scd stories podcast episode, awareness podcast, importance of sickle cell education, sickle cell in children, family stories of sickle cell, dwayne golden, sickle cell, marilyn jackson vegan chef, challenges of sickle cell trait, supporting family with sickle cell, scd false full 1 2 275d82c3-ee0d-48fb-bc86-85531f6a3647 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.
    • ]]>     Fri, 5 May 2023 04:00:00 +0000 dgolden@scpascc.org (Maria Mendoza, Dwayne Golden) https://www.SCPASCC.org
  • 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.
    • ]]>     Maria Mendoza's Story Maria Mendoza, Dwayne Golden 00:37:10 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 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. sickle cell disease, parent, privacy., support, education, dignity, bullying, communication, advocate, awareness false full 18 1     7cd8de39-e21c-451a-9b00-9672829d7022 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.
    • ]]>     Fri, 28 Apr 2023 04:00:00 +0000 dgolden@scpascc.org (George Chandler, Dwayne Golden, Dr. Allan Platt) https://www.SCPASCC.org
  • 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 & Destiny With Dr. Allan Platt George Chandler, Dwayne Golden, Dr. Allan Platt 00:32:45 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. 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. clinicians, emergency rooms, community groups, sickle cell disease, stigma., medical treatments, adult care, patients, education, genetic testing, families, physician assistants, hilton publishing company, patient communication, nurse practitioners, genetic disorder false full 17 1     ffc2b755-38f6-4db2-8916-84425e04d1dc Hope And Destiny With Dr. Lewis L. Hsu 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.

    ]]>     Fri, 21 Apr 2023 04:00:00 +0000 dgolden@scpascc.org (Dr. Lewiis Hsu, Dwayne Golden) https://www.SCPASCC.org 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.

    ]]>     Hope And Destiny With Dr. Lewis L. Hsu Dr. Lewiis Hsu, Dwayne Golden 00:35:13 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. 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. progress, awareness., lewis hsu, plain language, resources, revised edition, sickle cell trait, education, treatment, covid-19, " sickle cell disease, "hope & destiny, pain management false full 16 1     ee586317-591b-41b5-bff3-4cfd16125660 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/9780977316021

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

    ]]>     Fri, 14 Apr 2023 04:00:00 +0000 dgolden@scpascc.org (Dwayne Golden, Destiny Van Sciver) https://www.SCPASCC.org 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

    ]]>     Destiny Van Sciver Dwayne Golden, Destiny Van Sciver 00:37:44 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. 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. " scd stories podcast, collaboration, trait., sickle cell disease, book donation, quality of life, advocacy, education, hematology clinics, testing, dwayne golden, destiny van sciver, "sickle cell superheroes false full 15 1     3d28c7ce-1332-4761-8a54-5413727972de Megan Lippert 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: info@hpcinternationalinc.com for anyone that is interested in being published or looking for the books.

    website: www.hpcinternationalinc.com

    ]]>     Fri, 7 Apr 2023 04:00:00 +0000 dgolden@scpascc.org (Megan Lippert, Dwayne Golden) https://www.SCPASCC.org 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: info@hpcinternationalinc.com for anyone that is interested in being published or looking for the books.

    website: www.hpcinternationalinc.com

    ]]>     Megan Lippert Megan Lippert, Dwayne Golden 00:36:12 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. 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. andrea mathews, megan lippert, " medical providers, publishing, "sickle what?", dr. lewin hsu, health-related content, "sickle cell heroes, lisa rose, allen plat, dr. james eckman, " sickle cell disease, "hope & destiny, hilton publishing co., children's sickle cell foundation, hospitals, destiny van sciver, patients. false full 14 1     ba10b6e1-74e8-43e4-9e51-0007b6d032d9 Shyala Pelmon, Living Well With Sickle Cell 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.

    ]]>     Fri, 24 Mar 2023 13:00:00 +0000 dgolden@scpascc.org (Dwayne Golden, Shyala Pelmon) https://www.SCPASCC.org 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.

    ]]>     Shyala Pelmon, Living Well With Sickle Cell Dwayne Golden, Shyala Pelmon 00:08:52 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 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. chronic disease, community advocacy, compassion., living well, self-care, sickle cell disease, grace, patience, pain tolerance, advocacy, understanding, empathy, chronic illness, patient communication, pain management, sickle cell, invisible disease false full 12 1     e7465f89-fdd2-4271-bb9f-ce4921991f0b Michelle Parr Story 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.

    ]]>     Fri, 17 Mar 2023 04:00:00 +0000 dgolden@scpascc.org (Michelle Parr, Dwayne Golden) https://www.SCPASCC.org 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.

    ]]>     Michelle Parr Story Michelle Parr, Dwayne Golden 00:09:58 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. 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. challenges, support groups, support system, positive mindset, peers, sickle cell disease, experiences, family, pain, relationships, motherhood, resilience, work, school, patient, hope., advocate false full 11 1     a8ff9adb-744a-4be1-8b32-fc95a7598286 Erica Whiterspoon Story 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.

    ]]>     Fri, 10 Mar 2023 14:00:00 +0000 dgolden@scpascc.org (Erica Whitherspoon, Dwayne Golden) https://www.SCPASCC.org 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.

    ]]>     Erica Whiterspoon Story Erica Whitherspoon, Dwayne Golden 00:41:11 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. 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. podcast, community, fear, difference, advocacy, support, label, hospitalization, friends., childhood, overachiever, sickle cell, illness, perseverance, awareness false full 10 1     d48b6db7-269c-45c0-8801-00ae42d1dcf2 EP #9 The Elle Cole Story 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.

    ]]>     Tue, 29 Jun 2021 15:00:00 +0000 dgolden@scpascc.org (Giant Foods, SCPASCC, Dwayne Golden, Elle Cole) https://www.SCPASCC.org 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.

    ]]>     EP #9 The Elle Cole Story Giant Foods, SCPASCC, Dwayne Golden, Elle Cole 00:42:03 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. 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. sickle cell disease, elle cole, stories, south central pa sickle cell council, cleverly changing, scpascc, dwayne golden, anemia false full 9 1     97fca04d-717e-470e-bba9-4883b9dad4ca EP #8 National Sickle Cell Day, The Toneisha Harris Story 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.

    ]]>     Sat, 19 Jun 2021 15:00:00 +0000 dgolden@scpascc.org (Toneisha Harrs, Dwayne Golden, Giant Foods, SCPASCC) https://www.SCPASCC.org 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.

    ]]>     EP #8 National Sickle Cell Day, The Toneisha Harris Story Toneisha Harrs, Dwayne Golden, Giant Foods, SCPASCC 00:19:25 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. 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. sickle cell disease, let's change the world, stories, toneisha harris, south central pa sickle cell council, team toneisha, scpascc, dwayne golden, anemia false full 8 1     b834d95f-2abc-49c0-ae9c-f38b532fadaa EP #7 The Debra Brizzard Story 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.

    ]]>     Tue, 25 May 2021 04:00:00 +0000 dgolden@scpascc.org (Dwayne Golden, Debra Brizzard, Giant Foods, SCPASCC) https://www.SCPASCC.org 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.

    ]]>     EP #7 The Debra Brizzard Story Dwayne Golden, Debra Brizzard, Giant Foods, SCPASCC 00:21:04 The Debra Brizzard advocacy story is a story of what it means to be a Sickle Cell advocate for almost 20 years now. Debra started knowing not much about sickle cell disease and now is considered one of the more knowledgeable advocates and agencies utilize her insight as they provide for their communities. Debra tells the story that many are not able to tell as her work is independent of a typical work schedule. The Debra Brizzard advocacy story is a story of what it means to be a Sickle Cell advocate for almost 20 years now. Debra started knowing not much about sickle cell disease and now is considered one of the more knowledgeable advocates and agencies utilize her insight as they provide for their communities. Debra tells the story that many are not able to tell as her work is independent of a typical work schedule. debra brizzard, sickle cell disease, stories, south central pa sickle cell council, scpascc, dwayne golden, anemia false full 7 1     5f7aed85-22e4-4229-91c1-fef847aba832 EP #6 The Twaina Williams Story 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.

    ]]>     Tue, 4 May 2021 15:00:00 +0000 dgolden@scpascc.org (SCPASCC, Dwayne Golden, Twaina Williams) https://www.SCPASCC.org 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.

    ]]>     EP #6 The Twaina Williams Story SCPASCC, Dwayne Golden, Twaina Williams 00:30:10 The Twaina WIlliams story is one of what it means to be a Sickle Cell parent of a 16 year old son that has Sickle Cell Disease. Twaina is an advocate in the Sickle Cell community, and works for the Children’s Sickle Cell Foundation of Pittsburgh Pennsylvania. The Twaina WIlliams story is one of what it means to be a Sickle Cell parent of a 16 year old son that has Sickle Cell Disease. Twaina is an advocate in the Sickle Cell community, and works for the Children’s Sickle Cell Foundation of Pittsburgh Pennsylvania. sickle cell disease, stories, south central pa sickle cell council, scpascc, dwayne golden, anemia, twaina williams false full 6 1     6214aac2-e9c2-4d32-87e4-0794188de128 Ep #5 Fredrika Nabbie Interview Tue, 27 Apr 2021 15:15:00 +0000 dgolden@scpascc.org (SCPASCC, Dwayne Golden) https://www.SCPASCC.org Ep #5 Fredrika Nabbie Interview SCPASCC, Dwayne Golden 00:19:32 disease, sickle, survivor, sickle cell disease, cell, sickle cell trait, family, pain, education, facts, fighter, hereditary, disorder, health, scpascc, dwayne golden, sickle disease, anemia, trait, awareness, south central pa sickle cell false full 5 1 249e16ce-a662-47bf-8519-5c9d8bdc96f2 EP #4 Shalawn James Story 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.

    ]]>     Tue, 20 Apr 2021 15:00:00 +0000 dgolden@scpascc.org (Shalawn James, SCPASCC, Dwayne Golden) https://www.SCPASCC.org 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.

    ]]>     EP #4 Shalawn James Story Shalawn James, SCPASCC, Dwayne Golden 00:41:18 The Shalan James story is one of what it means to be a Sickle Cell parent of a child who has sickle cell disease at a time when the average life expectancy of a person used to be only about 30 years. Shalawn’s son Jerrick who is currently at the time of this interview is 18 years old. Shalawn has been a key advocate for years in the Sickle Cell community and tells her story of overcoming her son's strokes, brain hemorrhaging, and more. The Shalan James story is one of what it means to be a Sickle Cell parent of a child who has sickle cell disease at a time when the average life expectancy of a person used to be only about 30 years. Shalawn’s son Jerrick who is currently at the time of this interview is 18 years old. Shalawn has been a key advocate for years in the Sickle Cell community and tells her story of overcoming her son's strokes, brain hemorrhaging, and more. disease, shalawn, sickle, survivor, sickle cell disease, cell, sickle cell trait, family, pain, education, facts, shalawn james, fighter, hereditary, jerrick, disorder, health, jerrick james, scpascc, dwayne golden, sickle disease, anemia, trait, awareness, south central pa sickle cell false full 4 1     d18baacb-e55b-4873-b4aa-9d3d37d72cff EP #3 Williams Family Story 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.

    ]]>     Tue, 13 Apr 2021 15:00:00 +0000 dgolden@scpascc.org (Dwayne Golden, Fredderick Williams Jr.) https://www.SCPASCC.org 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.

    ]]>     EP #3 Williams Family Story Dwayne Golden, Fredderick Williams Jr. 00:32:20 The Williams family story is a great picture of how a family unites together around a cause in an effort to fight with all diligence. This interview specifically is an opportunity to meet the first of all the parents Alisha and Freddrick of 17 year old Freddrick Jr., and we get a little time for specific questions for him to answer. The Williams family story is a great picture of how a family unites together around a cause in an effort to fight with all diligence. This interview specifically is an opportunity to meet the first of all the parents Alisha and Freddrick of 17 year old Freddrick Jr., and we get a little time for specific questions for him to answer. disease, jr., alisha, sickle, survivor, williams, sickle cell disease, cell, sickle cell trait, family, pain, education, facts, stories, fighter, hereditary, south central pa sickle cell council, disorder, health, scpascc, dwayne golden, sickle disease, trait, awareness, freddrick, south central pa sickle cell false full 3 1     dec4f9c5-a0a2-4d5c-b682-6a3bf1031ab1 EP #2 Tristan Lee Interview 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.

    ]]>     Tue, 6 Apr 2021 15:00:00 +0000 dgolden@scpascc.org (Dwayne Golden, SCPASCC, Tristan Lee) https://www.SCPASCC.org 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.

    ]]>     EP #2 Tristan Lee Interview Dwayne Golden, SCPASCC, Tristan Lee 00:25:37 The Tristan Lee story is one of what it means to have sickle cell disease at a time when the average life expectancy of a person was only about 30 years. Tristan now at the age of 30 is an international advocate for Sickle Cell Disease. He is a fashion designer, actor and community advocate for people who deal with disparities. The Tristan Lee story is one of what it means to have sickle cell disease at a time when the average life expectancy of a person was only about 30 years. Tristan now at the age of 30 is an international advocate for Sickle Cell Disease. He is a fashion designer, actor and community advocate for people who deal with disparities. disease, sickle, survivor, sickle cell disease, cell, sickle cell trait, family, pain, education, facts, fighter, hereditary, disorder, health, scpascc, dwayne golden, sickle disease, anemia, trait, awareness, south central pa sickle cell false full 2 1     50b1670a-fbb2-4808-a32b-3aaefaaffb21 EP #1 Ronald Johnson Story 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.

    ]]>     Tue, 23 Mar 2021 15:00:00 +0000 dgolden@scpascc.org (Dwayne Golden, Ronald Johnson, SCPASCC) https://www.SCPASCC.org 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.

    ]]>     EP #1 Ronald Johnson Story Dwayne Golden, Ronald Johnson, SCPASCC 00:42:27 Ronald Johnson’s story is one of what it means to have sickle cell disease at a time when the average life expectancy of a person was only about 30 years. Ronald is a strong advocate for the Sickle Cell Community. Hear his story and see how he overcame the challenges from early childhood to now 57 years of life. Ronald Johnson’s story is one of what it means to have sickle cell disease at a time when the average life expectancy of a person was only about 30 years. Ronald is a strong advocate for the Sickle Cell Community. Hear his story and see how he overcame the challenges from early childhood to now 57 years of life. disease, sickle, survivor, sickle cell disease, cell, sickle cell trait, family, pain, education, facts, fighter, hereditary, disorder, health, scpascc, dwayne golden, sickle disease, anemia, trait, awareness, south central pa sickle cell false full 1 1     5c692817-2f2f-4931-92e2-df2cf0ec0a6e Welcome To SCD Stories 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 families about their path that include their struggles, successes and tragedy while dealing with sickle cell so that we can all have a human life attached to the label of sickle cell disease and not just a name of a diagnosis.

    As the host  my  hopes are to make sure that during the interviews we can touch upon the areas not yet known among most health professionals, community leaders and others who can assist lead the charge against this horrific disease.sick

    ]]>     Sun, 21 Mar 2021 23:35:38 +0000 dgolden@scpascc.org (scpascc, Dwayne Golden) https://www.SCPASCC.org 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 families about their path that include their struggles, successes and tragedy while dealing with sickle cell so that we can all have a human life attached to the label of sickle cell disease and not just a name of a diagnosis.

    As the host  my  hopes are to make sure that during the interviews we can touch upon the areas not yet known among most health professionals, community leaders and others who can assist lead the charge against this horrific disease.sick

    ]]>     Welcome To SCD Stories scpascc, Dwayne Golden 00:04:24 SCD Stories are the stories of people and their families who live with Sickle Cell Disease. Through the stories of their daily lives we can better understand why this disease requires a greater awareness for us all. SCD Stories are the stories of people and their families who live with Sickle Cell Disease. Through the stories of their daily lives we can better understand why this disease requires a greater awareness for us all. disease, sickle, survivor, sickle cell disease, cell, sickle cell trait, family, pain, education, facts, fighter, hereditary, disorder, health, scpascc, dwayne golden, sickle disease, anemia, trait, advocate, awareness, south central pa sickle cell false trailer 1