sickle cell anemia

In this episode MedPro Group's claims consultant, Barri Orlow discusses a challenging case involving a patient with sickle cell anemia where the patient did not provide the physician with good information about their health history.

Sickle Cell Disease affects many of us, so we’re fully diving into the topic today. While you may have heard of this disease, it is serious and widespread–disproportionately affecting Black or African American populations. Our thanks to Erin Fulbright of The Sickle Cell Association of South Louisiana for being our guest on this episode.

Welcome everyone to the Melanin Initiative!  “In healthcare, there is often too much information and not enough time. Here at The Melanin Initiative, we avoid TMI by breaking things down into language you can understand, we create a safe space to ask your questions, and share our nursing perspective without taking too much of your time.

Today we’ll be talking about sickle cell disease from the patient perspective and what it means to live with chronic pain, with emphasis on disparities in pain management.

By the end of the show, we hope you’ll be able to:
-Talk about what is sickle cell disease
-Name risk factors for getting sickle cell (genetics)
-Discuss diagnosis and treatment options
-Understand what it’s like to live with chronic pain
- Disparities in pain and what clinicians can do to improve

Resources:
-Sickle cell disease: What you need to know https://www.youtube.com/watch?v=qK5H9fPkltc
-Sickle cell disease: diagnosis, treatment, pregnancy, and what it's like ot live with SCD per the National Institutes of Health https://www.nhlbi.nih.gov/health/sickle-cell-disease
-Sickle Cell Disease Foundation https://www.scdfc.org/community-education
- American Nurses Association Continuing Education: Caring for Individuals with Sickle Cell Disease (1.5 contact hours. Course & CNE Credit Expiration: 06/01/2024) https://www.nursingworld.org/continuing-education/caring-for-individuals-with-sickle-cell-disease/
- For Nurse Practitioners: Sickle cell anemia Continuing Education (expires Dec 31, 2024) https://www.statpearls.com/nursepractitioner/ce/activity/684944
- For clinicians: Sickle Cell Disease Coalition, training and professional education http://www.scdcoalition.org/priorities/training.html



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*This show is for educational purposes only. The opinions expressed are our opinions alone, they are not a representation of any of our affiliations. If you are experiencing a medical emergency, you should seek medical attention and medical guidance from your healthcare provider.

We wrap up our conversation with Dr. Gregory Yanik, Director of the Pediatric Blood and Marrow Transplant Program at the University of Michigan Medical Center in Ann Arbor, Michigan. 

Parts 1 and 2 of this double bonus episode is a must-listen for every patient, family, and doctor in the healthcare field.  Dr. Yanik epitomizes a model of compassion and respect for families and patients that every healthcare center should replicate and implement ASAP. 

This episode covers graft versus host disease, patient advocacy, the latest in half and full-match bone marrow transplant options for patients with sickle cell anemia, gene editing, recently completed studies from the Bone Marrow Transplant Clinical Trial Network, and much more!

You're in for a treat, WITH listeners! Have you ever interacted with a doctor and asked yourself, "how can I clone this provider so everyone can have this great experience?"  Well, I have and this is the doctor I wish every single person receiving medical care could receive it from. Dr. Gregory Yanik is the Director of the Pediatric Blood and Marrow Transplant Program at the University of Michigan Medical Center in Ann Arbor, Michigan. 

From the moment you press play, you will hear why he's the GOAT. This is a can't miss episode. 

Dying Fan Inspired This Basketball Star To Write Book

#sicklecellanemia #jdslajchert #author #newbook #inspiration

JD Slajchert is an American novelist, public speaker, philanthropist and screenwriter. Three months after graduating from college, his debut novel MoonFlower was published in 2018. Following the rapid success of his first book, JD embarked on a year-long speaking tour where he talked directly about his career as a college athlete, his journey into becoming an author and his incredible bond with his best friend, Luc Bodden. In the twelve-months following the release of his book, JD reached over 100,000 people with his message, culminating with him delivering the UC Santa Barbara ICA Commencement address to the Class of 2019. JD Slajchert is the Director of Relationship Development for The LucStrong Foundation and a National Ambassador for The American Red Cross. JD Slajchert also co-wrote the original screenplay inspired by his real-life relationship with Luc Bodden, “Happy at You.”

Website: https://www.jdwritesbooks.com/
Instagram: https://www.instagram.com/jd_slajchert
Facebook: https://www.facebook.com/jd.slajchert
Twitter: https://twitter.com/jd_slajchert

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Survivor Aisha Stokes of Southfield, Michigan was not a cancer patient.  She battled sickle cell anemia for the first 24 years of her life.   But it was a clinical trial involving what's traditionally a cancer course of treatment - that changed everything.

Aisha walks us through the decision to enroll in this trial just before an upcoming birthday would have made her ineligible. Following pheresis, she underwent an intense four day chemotherapy treatment, followed by a stem cell transplant, with her own modified cells.

Aisha is very honest about how difficult chemotherapy was for her, but how this clinical trial eliminated her sickle cell crises, or flare-ups, and how she's living her best life today.

She also speaks of her mother, who was instrumental throughout her treatment, but recently passed away.  This episode is dedicated to her sweet mom.

More:

US Clinical Trials Website: https://clinicaltrials.gov/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to this season's sponsors:

Omeros Corporation: https://www.omeros.com/

Incyte: https://www.incyte.com/

The final episode of Bringing Sickle Cell Disease to Life explores the concepts of putting research into practice, implementation science, and advocacy. Dr. Wally Smith hears from sickle cell pioneer and researcher Dr. Marilyn Hughes Gaston about early research with hydroxyurea. Sickle cell disease (SCD) provider and warrior Dr. Titilope Fasipe talks about how she learned to be an advocate to influence public policy. The season closes with final encouraging words from clinicians and researchers in SCD, including Drs. James Eckman, JJ Strouse, Michael DeBaun, and Solomon Ofori-Acquah. Learn more by reading through the resources in the list below.

• ASH Advocacy Leadership Institute - https://www.hematology.org/advocacy/ali
• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitment

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Sickle cell disease (SCD) affects people all over the world. In this episode, Dr. Wally Smith interviews Dr. Russell Ware, an SCD provider and researcher who assembled an international team of experts to participate in global clinical trials. International SCD researcher Dr. Solomon Ofori-Acquah shares the story of how he got into research and how he expanded his projects to include many African countries. Learn more by reading through the resources in the list below.

• Caribbean Network of Researchers on Sickle Cell Disease and Thalassemias (CAREST) - https://carest-network.org/?lang=en
• Global Sickle Cell Disease Network (GSCDN) - https://www.globalsicklecelldisease.org/
• ASH Consortium on Newborn Screening in Africa (CONSA) - https://www.hematology.org/global-initiatives/consortium-on-newborn-screening-in-africa
• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitment

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Not enough hematologists specialize in sickle cell disease (SCD) to reach all the people who need care. Host Dr. Wally Smith talks with Dr. JJ Strouse about outreach programs he has developed to reach individuals in rural communities. SCD expert care provider and researcher Dr. Michael DeBaun describes how he involves physicians from many other disciplines to treat people with SCD. Dr. James Eckman describes how he has implemented physician extenders to engage non-physicians in important care roles. Shauna Whisenton provides the perspective of someone living with SCD regarding how community health workers provide care. Dr. Sophie Lanzkron explains how a hub and spoke model supports providers and their teams so that all individuals can access high-quality care. Learn more by reading through the resources in the list below.

• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH SCD guidelines for management of acute and chronic pain - https://ashpublications.org/bloodadvances/article/4/12/2656/460974/American-Society-of-Hematology-2020-guidelines-for
• American College of Emergency Physicians managing sickle cell disease in the ED point-of-care tool - https://www.acep.org/sickle-cell/
• ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitment
• International Association of Sickle Cell Nurses and Professional Associates - https://www.iascnapa.org/#:~:text=Our%20association's%20mission%20is%20to,cell%20disease%20through%20advocacy%2C%20standardized

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Researchers, patients, and providers discuss the importance of a quality “medical home” for people living with sickle cell disease (SCD). ASH Research Collaborative Community engagement Manager Shauna Whisenton, an SCD warrior, describes the benefits she experienced once she found a medical home. SCD experts share their experiences creating treatment centers. Dr. James Eckman explains how he gained support and funding to develop one of the first infusion clinics for individuals living with SCD. Drs. JJ Strouse and Dr. Sophie Lanzkron describe their experiences developing sickle cell disease centers like medical homes that can coordinate the complex care needed by people living with SCD. Learn more by reading through the resources in the list below.

• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH SCD guidelines for management of acute and chronic pain - https://ashpublications.org/bloodadvances/article/4/12/2656/460974/American-Society-of-Hematology-2020-guidelines-for
• American College of Emergency Physicians managing sickle cell disease in the ED point-of-care tool - https://www.acep.org/sickle-cell/
• ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitment

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Translational research discoveries have been critical in improving care for people living with sickle cell disease (SCD). In this episode, Dr. Courtney Fitzhugh shares her passion for translational research and how it can directly help individuals living with SCD. Kyle Smith describes how acute chest syndrome impacts his day-to-day activities. Dr. Solomon Ofori-Acquah, an SCD researcher who studies acute chest syndrome, explains to host Dr. Wally Smith how his work goes from the lab bench to the bedside of people living with the disease. Racial disparities are also present in the SCD research space, and a diverse workforce is necessary to eliminate current barriers to research based on discrimination. Learn more by reading through the resources in the list below. 

• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH priorities for sickle cell disease and sickle cell trait - https://www.hematology.org/research/sickle-cell-disease-and-sickle-cell-trait
• ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitment

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Emergency departments (ED) are inevitable for people living with sickle cell disease (SCD).  Many clinicians in the ED, however, misunderstand the disease and perceive patients as drug seekers.  This episode explores how education can help shift attitudes and how proper data and support can improve clinics. Shauna Whisenton describes an experience that is common for people living with the disease when they visit the ED, and shares how the ASH Research Collaborative is committed to engaging the community in research and clinical trials. Despite her own negative experiences with ED doctors, Dr. Titilope Fasipe recognizes that there are physicians who actually care about individuals with the disease and want to do better Drs. James Eckman, JJ Strouse, and Sophie Lanzkron describe the changes they have made in their hospitals to provide better care to people living with SCD who visit the ED. Learn more by reading through the resources in the list below. 

• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative
• ASH SCD Guidelines for Management of Acute and Chronic Pain - https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/scd-guidelines-management-of-acute-and-chronic-pain
• Managing Sickle Cell Disease in the ED Point-of-Care Tool - https://www.acep.org/sickle-cell/
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• Centers for Disease Control and Prevention Sickle Cell Data Collection Program - https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc.html
• Sickle Cell Disease Association of America Patient Powered Registry - https://www.sicklecelldisease.org/sickle-cell-health-and-disease/getconnected/
• National Institute for Health and Care Excellence: Sickle Cell Disease: Managing Acute Painful Episodes in Hospital (UK Guidance) - https://www.nice.org.uk/guidance/cg143/chapter/Recommendations

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Structural racism and implicit bias are prominent in the care of people living with sickle cell disease (SCD). Dr. Marilyn Hughes Gaston shares how she unwittingly showed bias early in her career and learned from her mistake. Host Dr. Wally Smith talks to several people living with SCD who have experienced bias first-hand, including ASH Research Collaborative SCD Community Engagement Manager Shauna Whisenton, an individual cured of SCD, and Dr. Titilope Fasipe, an SCD warrior and physician. Pioneer in SCD care and research Dr. James Eckman and Dr. Sophie Lanzkron share strategies they are using in their clinics to combat structural racism and provide better care for their patients. Kyle Smith emphasizes that people battling SCD deserve compassionate care. Learn more by reading through the resources in the list below. 
Relevant resources: 

• ASH Sickle Cell Disease Initiative -  https://www.hematology.org/advocacy/sickle-cell-disease-initiative
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH Anti-Racism Toolkit - https://www.hematology.org/diversity-equity-and-inclusion/anti-racism-toolkit

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Severe pain, which is the most common complication for people living with sickle cell disease (SCD), severely affects their quality of life. This episode starts with a passage about the excruciating pain a person living with SCD endures read by SCD care and research pioneer Dr. Marilyn Hughes Gaston. Host Dr. Wally Smith talks to Kyle Smith, an advocate and SCD warrior, about his many experiences with pain from the disease. Dr. Titilope Fasipe, an SCD provider and an individual living with the disease, discusses how sickle cell is defined in other countries and differences in perception and understanding of SCD in the United States. SCD experts and care providers Dr. Sophie Lanzkron and Dr. JJ Strouse share strategies and guidelines for managing pain crises in the emergency department. Understanding and applying objective guidelines will help clinicians recognize and avoid implicit bias. Learn more by reading through the resources in the list below. 
Relevant resources: 

• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative 
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH SCD Guidelines for Management of Acute and Chronic Pain - https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/scd-guidelines-management-of-acute-and-chronic-pain
• ASH pain management resources: https://www.hematology.org/advocacy/sickle-cell-disease-initiative/pain-management-resources
• Crescent Foundation: A Sickle Cell Initiative - https://www.crescentfoundationscd.org/ 
• NIH Workshop: Approaches to Effective Therapeutic Management of Pain for People With SCD - https://www.nccih.nih.gov/news/events/approaches-to-effective-therapeutic-management-of-pain-for-people-with-sickle-cell-disease
• Article: Pain in Sickle Cell Disease. Rates and Risk Factors - https://pubmed.ncbi.nlm.nih.gov/1710777/
• Book: Dying in the City of the Blues by Keith Wailoo - http://www.keithwailoo.com/dyinginthecity
• Book: The Troubled Dream of Genetic Medicine by Keith Wailoo - http://www.keithwailoo.com/troubleddream

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

In the final episode of Season 1, Dr. Courtney Fitzhugh encourages medical students interested in sickle cell disease to get involved and reach out to a mentor. She shares her journey to becoming a physician scientist with a lab at the National Institutes of Health where groundbreaking research is translated into patient care. Learn about joining ASH, find resources for trainees and medical students at www.hematology.org/awards and find relevant opportunities with E. E. Just at http://eejusthematology.org/.
Find additional information about ASH's Sickle Cell Disease Initiative by visiting https://www.hematology.org/advocacy/sickle-cell-disease-initiative. Learn about ASH's Minority Recruitment Initiative at https://www.hematology.org/awards/minority-recruitment. 
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

In this episode, Dr. Betty Pace explains her path to conducting research in sickle cell disease. As a clinician and researcher, she shares how she was able to bring the clinical perspective to the lab. Learn some important techniques to secure an independent investigator status and overcome challenges including concerns about financial security.
Learn more about ASH sickle cell disease research priorities by visiting https://www.hematology.org/research/sickle-cell-disease-and-sickle-cell-trait/other-sickle-cell-priorities.
Principal investigators holding specific NIH grants can apply for diversity supplements to support high school, undergraduate, graduate/clinical students, post-doctorates (including health professionals), and eligible investigators that are underrepresented in the biomedical sciences. Find more at https://grants.nih.gov/grants/guide/pa-files/PA-21-071.html. Learn about PRIDE (programs to increase diversity among individuals engaged in health-related research) via https://www.nhlbi.nih.gov/grants-and-training/training-and-career-development/diversity/pride.
Access information about the ASH Research Collaborative via https://www.ashresearchcollaborative.org/s/.
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Young individuals living with sickle cell disease eventually age out of the pediatric units and struggle as they transition to adult care. In this episode, we hear from Kyle, a person living with sickle cell disease, about his experience transitioning from pediatric to adult care. Dr. James Eckman and Dr. John J. Strouse explain the typical problems that arise with this transition and some possible solutions to the lack of adult care networks. Lastly, Dr. Titilope Fasipe shares valuable advice for young people living with sickle cell disease as they transition from pediatric to adult care. Resources for clinicians and patients individuals living with the disease are recommended.
Learn more about sickle cell disease (https://www.hematology.org/education/patients/anemia/sickle-cell-disease) and the ASH Sickle Cell Disease initiative by visiting https://www.hematology.org/advocacy/sickle-cell-disease-initiative. Additional SCD resources for clinicians are available via https://www.hematology.org/education/clinicians/clinical-priorities/scd-resources-for-clinicians. Access an SCD toolkit from the CDC at https://www.cdc.gov/ncbddd/sicklecell/betterhealthtoolkit/index.html. Learn more about the Sickle Cell Disease coalition at http://www.scdcoalition.org/transition/medical.html. 
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

In the past, children with undiagnosed sickle cell disease were at risk of dying in as little as nine hours of sepsis. In this episode of Bringing Sickle Cell Disease to Life, we hear more from Kyle, an individual living with sickle cell disease. Dr. Wally Smith interviews Dr. James Eckman about the importance of newborn screening. Dr. Russell Ware explains his decision to care for  individuals living with sickle cell disease and to start research in this area. Learn how hydroxyurea transformed children’s lives and the stepwise approach used in developing clinical trials to treat children with this disease.
Learn more about ASH's Sickle Cell Disease initiative by visiting https://www.hematology.org/advocacy/sickle-cell-disease-initiative, and find additional information about the use of hydroxyurea for sickle cell disease via https://www.hematology.org/-/media/hematology/files/education/hydroxyurea-booklet.pdf?la=en&hash=7498C7D4A15208ED96214110693105F7. 
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/