Group of genetic blood disorders
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Send us a Text Message (please include your email so we can respond!)Episode 66! Today we talk about Acute Chest Syndrome in Sickle Cell Disease with one of our favorite hematologists, Benjamin Tillman! We base our discussion around the TASC trial or "Comparison of Prophylactic and Therapeutic Doses of Anticoagulation for Acute Chest Syndrome in Sickle Cell Disease" published by Dessap et al in AJRCCM April of 2025.Pubmed: https://pubmed.ncbi.nlm.nih.gov/40209087/AJRCCM: https://www.atsjournals.org/doi/10.1164/rccm.202409-1727OCIf you enjoy the show be sure to like and subscribe, leave that 5 star review! Be sure to follow us on the social @icucast for the associated figures, comments, and other content not available in the audio format! Email us at icuedandtoddcast@gmail.com with any questions or suggestions! Thank you Mike Gannon for the intro and exit music!
Sickle cell disease is a genetic abnormality that causes red blood cells to sickle instead of being round, and a host of problems result, including excruciatingly painful sickle cell crises. Rick Jones, an expert in blood disorders and cancer at … What's the best way to cure sickle cell disease? Elizabeth Tracey reports Read More »
Bone marrow transplants used to be limited to just those people with sickle cell disease who could receive bone marrow from a matched donor. Rick Jones, an expert in blood disorders and cancers at Johns Hopkins, and colleagues have just … A new technique cures most people with sickle cell disease, Elizabeth Tracey reports Read More »
Headlines have announced that sickle cell disease can be cured with gene therapy. Now there's a better way developed at Johns Hopkins and other centers around the world, using what are called ‘half-matched donors,' to give new bone marrow to … A new technique is better than gene therapy for curing sickle cell disease, Elizabeth Tracey reports Read More »
Gene therapy for sickle cell disease has a breathtaking price tag of 2-3 million dollars per person, and for some people who receive it, is doesn't actually cure the condition. That's according to Richard Brodsky, a sickle cell expert at … Gene therapy for sickle cell disease often isn't a cure, Elizabeth Tracey reports Read More »
Sickle cell disease was thought to be cured using gene therapy, but longer term follow up reveals that while the condition improves many are not cured. Now a new approach developed at Johns Hopkins and around the world uses ‘half-matched' … Sickle cell disease should be treated with a half-matched donor approach, Elizabeth Tracey reports Read More »
oumana Moallem is the devoted mother of Mariam, who lives with a chronic case of Sickle Cell Disease. As her primary caregiver, Joumana has dedicated her life to ensuring her daughter's health and happiness while navigating the daily challenges of this complex illness. Together, Joumana and her daughter are passionate about raising awareness of Sickle Cell Disease. By sharing their journey, Mariam hopes to inspire others with her resilience, while Joumana highlights the strength and sacrifices of caregiving. Their story is a powerful reminder of the importance of advocacy and love in overcoming life's obstacles.
In this episode of the VJHemOnc podcast you will hear from Akshay Sharma, MBBS, MSc, St. Jude Children's Research Hospital,... The post Gene therapy in sickle cell disease: patient selection, potential complications, & more appeared first on VJHemOnc.
In the March 2025 episode of Critical Decisions in Emergency Medicine, Drs. Danya Khoujah and Wendy Chang discuss pediatric sickle cell disease and trauma-informed care. As always, you'll also hear about the hot topics covered in Critical Decisions' regular features, including a child with difficulty walking in Clinical Pediatrics, sternoclavicular joint septic arthritis in Orthopedics and Trauma, interscalene nerve block in The Critical Procedure, intranasal topical application of tranexamic acid for atraumatic anterior epistaxis in The LLSA Literature Review, and a toddler with arm pain in The Critical Image.
On this episode of Cheat Codes, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, is joined by sickle cell advocates Teonna Woolford, Cassandra Trimnell, and Rae Blaylark discuss the challenges and rewards of sickle cell advocacy. They delve into personal journeys, the nuances of advocacy, and the importance of self-care. The conversation highlights the power of community, the significance of setting boundaries, and the need for therapeutic support. The advocates also reflect on the impact of their work and offer advice for the next generation of sickle cell advocates. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. TRANSPARENCY STATEMENT Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guests featured in this episode have been compensated for their time.
This week we talk to Dr Amy Webster, a consultant haematologist in Leicester and head of the haemoglobinopathy service here.We talk about the pathophysiology behind the disease this week, as well as the varying ways patients present. We also cover some of the challenges patients face in hospital getting the treatment they need. Be sure to tune in!Also check out our link tree for q feedback questionnaire and our discord server!https://linktr.ee/memcast?fbclid=PAZXh0bgNhZW0CMTEAAae8FiKiVcddms52uynYTAD0AKMj3DV6RGWExS-o9nh9OfV6pffVefR0W0JzHA_aem_Az35qkAICNmbNHGPP66DPw
In this week's episode, we'll learn more about how measurable residual disease might help guide decisions about post-transplant gilteritinib maintenance in FLT3-ITD acute myeloid leukemia, or AML; how stemness contributes to chemotherapy resistance in AML; and effects of babesiosis on red blood cells from individuals with sickle cell disease, sickle cell trait, and wild-type hemoglobin. Featured Articles:Measurable residual disease and post-transplantation gilteritinib maintenance for patients with FLT3-ITD-mutated AML GATA2 links stemness to chemotherapy resistance in acute myeloid leukemia Babesiosis and Sickle Red Blood Cells: Loss of Deformability, Heightened Osmotic fragility and Hyper-vesiculation
On this episode, Dr. Z and Dr. C. Callahan interview Dr. Isaac Odame, a leading figure in the field of sickle cell disease. Dr. Odame shares his life story, beginning in Ghana, his medical training in the UK, and his global contributions to sickle cell research, including involvement with the Global Sickle Cell Disease Network. The discussion covers his work in various countries, the challenges, and successes in treating sickle cell disease, and his family's influence on his career. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community. TRANSPARENCY STATEMENT Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.
We learn about Sickle Cell Disease and why it largely impacts African Americans. Tackling the lack of diversity in clinical research. We speak to the author of “Dear Black Girl: I See You.”
Drs. Z and C welcome Dr. Wally Smith, a leading figure in sickle cell research from Virginia Commonwealth University, to discuss crucial issues affecting adults with sickle cell disease. They explore the neglect of adult patients, the need for dedicated centers, and the value of community health workers. Dr. Smith emphasizes the importance of holistic healthcare solutions, state-level policy initiatives, and community support to improve quality of life and outcomes for sickle cell patients. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community. TRANSPARENCY STATEMENT Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.
Dr. Eric Kmiec is Director of the Gene Editing Institute of the Helen F. Graham Cancer and Research Institute at Christiana Care Health System. He also holds faculty appointments at the University of Delaware and the Wistar Institute. Eric and his colleagues are working to develop new ways to treat cancer by destroying the genes that cause cancer cells to be resistant to typical therapies like chemotherapy, radiation, or immunotherapy. Throughout his life, Eric has enjoyed sports. He particularly likes playing baseball and hockey, and he still plays baseball competitively in a league in Philadelphia. Eric also spends much of his time doing landscaping and yard work. He Received his B.A. in Microbiology from Rutgers University, his M.S. in Cell Biology and Biochemistry from Southern Illinois University, and his Ph.D. in Molecular Biology and Biochemistry from the University of Florida School of Medicine. He conducted postdoctoral research at the University of Rochester before joining the faculty at the University of California, Davis in 1987. Since then, he has served on the faculty of Thomas Jefferson University, the University of Delaware, and Delaware State University. In addition, Eric founded, consulted for, and served as Vice President of Kimeragen, Inc., he was Chief Scientific Advisor for the Genomics Division of Tapestry Pharmaceuticals, was an Eminent Scholar and Director of the Marshall University Institute for Interdisciplinary Research, and also served as Co-Founder, Chief Scientific Officer, and a Board Member of OrphageniX. Eric has received numerous awards and honors over the course of his career, including receipt of the 2012 Proudford Foundation Unsung Hero Award in Sickle Cell Disease, designation as an Honorary Commander of the 436th Air Wing at Dover Air Force Base in 2013 and 2014, and also induction into the Southern Illinois University, Edwardsville Alumni Hall of Fame in 2012. Further, Eric and the team at the Gene Editing Institute were recently awarded the inaugural Life Sciences and Bio Innovation Award from the Philadelphia-Israeli Chamber of Commerce. In our interview, Eric shared his experiences in life and science.
Diane M. Hinds|Author|Trinidad's Untold Past| Colonialism|Conflict|ChangeDiane M. Hinds is an author and distinguished entertainment publicist with a profound connection to Trinidad, stemming from her formative years on the island between 1975 and 1979. During this period, her father, Rev. Kenneth Hinds, served as a Clerk in Holy Orders after being ordained at St Albans Abbey by Archbishop Bob Runcie. These experiences deeply influenced Diane, fueling her passion for sharing pivotal yet often overlooked chapters of Caribbean history. Her debut novel, Conquerabia: The Struggle for Identity, offers a masterfully fictionalised account of Trinidad's history. The narrative spans from Christopher Columbus's discovery of the island in 1498 to its cession from Spain to Britain's Sir Ralph Abercromby. The novel delves into significant events, including the tenure of the island's first governor, Thomas Picton, and examines the profound impact of the abolition of slavery on Trinidad's social and cultural landscape. Through this work, Diane captures the resilience and indomitable spirit of Trinidad's people, paying tribute to the rich heritage that has shaped the vibrant island known today. Beyond her literary endeavours, Diane is recognised for her career as an entertainment publicist and her role as a dynamic speaker. Her personal journey, including managing Sickle Cell Disease, brings added depth to her insights on Trinidad's past and her creative process. Diane's unique perspective makes her an engaging addition to literary podcasts focusing on postcolonial narratives, Caribbean heritage, and the fusion of fiction with historical fact.Link:https://dianehindswrites.com/fSupport PEG by checking out our Sponsors:Download and use Newsly for free now from www.newsly.me or from the link in the description, and use promo code “GHOST” and receive a 1-month free premium subscription.The best tool for getting podcast guests:https://podmatch.com/signup/phantomelectricghostSubscribe to our Instagram for exclusive content:https://www.instagram.com/expansive_sound_experiments/Subscribe to our YouTube https://youtube.com/@phantomelectricghost?si=rEyT56WQvDsAoRprPEG uses StreamYard.com for our live podcastshttps://streamyard.com/pal/c/6290085463457792Get $10.00 Credit for using StreamYard.com when you sign up with our linkRSShttps://anchor.fm/s/3b31908/podcast/rss
On this inspiring episode of Cheat Codes, Dr. Z and Dr. C talk with an extraordinary group of individuals who embarked on a monumental climb up Mount Kilimanjaro to raise awareness and funds for sickle cell disease. Led by Dr. Alan Anderson and featuring sickle cell warrior Jimi Olaghere the group of Patrick Hines, MD, PhD, Eva Gallagher, PhD, and Audra Boscoe, PhD shares personal stories of perseverance, determination, and the powerful symbolism of their climb. They discuss the challenges they faced, both mental and physical, and the life-changing impact of their journey. With over $2 million raised, the episode concludes with a hopeful message for the future of sickle cell diagnosis and treatment in Sub-Saharan Africa. Audra Boscoe and Eva Gallagher are employees of Agios Pharmaceuticals. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. TRANSPARENCY STATEMENT Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.
This episode of the VJHemOnc podcast covers updates in non-malignant hematological diseases from the 66th American Society of Hematology (ASH)... The post Post-ASH non-malignant highlights: updates in sickle cell disease, thalassemia, and hemophilia appeared first on VJHemOnc.
In the January 2025 episode of Critical Decisions in Emergency Medicine, Drs. Danya Khoujah and Wendy Chang discuss factitious disorder in the emergency department and sickle cell disease in adults. As always, you'll also hear about the hot topics covered in Critical Decisions' regular features, including ingestion of a water-growing toy in Clinical Pediatrics, a posterior knee dislocation in Orthopedics and Trauma, local anesthetic for nasal reduction in The Critical Procedure, Bystander CPR in Black and Hispanic communities in The LLSA Literature Review, and a fall in a parking lot in The Critical Image.
Dr. Shameka Poetry Thomas is a medical sociologist with special interest in reproductive justice and genetics technology as well as the intersection of maternal healthcare with sickle cell disease. After receiving her Ph.D. from the University of Miami, she completed her two-year postdoctoral fellowship at the National Institutes of Health (NIH)/National Human Genomics Research Institutes (NHGRI).In this episode, Dr. Thomas centers the experiences of pregnant Black women with sickle cell disease, who, despite advances in medicine, genetics and reproductive technology, have been neglected by research communities due to intersecting marginalized identities despite high mortality during pregnancy and childbirth. Dr. Thomas walks us through what non-invasive prenatal testing (NIPT) is and how it relates to sickle cell disease specifically. Her work comes to life by illustrating the converging effects of colonialism, racism, bias and stigmatization through moving real-world stories. Her research sheds light on the lived experiences of patients who are left to integrate complex information from multiple specialists to interpret meanings for themselves, their families, their finances and their communities in the setting of collective and individual trauma. She describes the importance of using qualitative research methods to explore a range of experiences within groups rather than treating groups as a monolith. She also acknowledges the heaviness of this type of qualitative work and the importance of dissemination of findings to spark action.Dr. Thomas connected the long history of research abuses in the US to current-day research practices that continue to disrespect Black women. For example, recent sickle cell disease NIPT research was conducted without incorporating the unique lived experiences of the affected women to understand whether and how to incorporate these technologies into practice. She emphasized the urgent need for the development and implementation of more comprehensive ethical guidelines in the field of reproductive health. These guidelines should specifically address the ethical dimensions of research on sickle cell disease and the burgeoning field of genetic technology, ensuring that the rights, dignity, and well-being of those affected particularly within marginalized communities. Finally, Dr. Thomas called for more robust advocacy efforts aimed at amplifying the voices of Black women and other marginalized groups in the creation of healthcare policies and research priorities. Such advocacy must not only challenge existing inequities but also ensure that affected communities have the power and agency to influence decisions that impact their lives, fostering a healthcare system that is equitable, inclusive, and just.Read Dr. Thomas's work here:Thomas SP, Fletcher FE, Willard R, Ranson TM, Bonham VL. Patient Perceptions on the Advancement of Noninvasive Prenatal Testing for Sickle Cell Disease among Black Women in the United States. AJOB Empir Bioeth. 2024 Apr-Jun;15(2):154-163. doi: 10.1080/23294515.2024.2302996. Epub 2024 Feb 13. PMID: 38349128.Thomas SP. Trust Also Means Centering Black Women's Reproductive Health Narratives. Hastings Cent Rep. 2022 Mar;52 Suppl 1:S18-S21. doi: 10.1002/hast.1362. PMID: 35470876.Fletcher F, Thomas SP, Lapite FC, Ray K. Bioethics Must Exemplify a Clear Path toward Justice: A Call to Action. Am J Bioeth. 2022 Jan;22(1):14-16. doi: 10.1080/15265161.2021.2001113. PMID: 34962203; PMCID: PMC9302876.
In this week's episode we'll learn more about an experimental regimen for classical Hodgkin lymphoma that combines brentuximab vedotin, nivolumab, and chemotherapy; a possible role for type 1 interferon signaling in developing autoantibodies to red blood cells in sickle cell disease; and how genomic alterations affecting class I human leukocyte antigen molecules may affect patients with cutaneous T-cell lymphoma. Featured Articles:Brentuximab vedotin, nivolumab, doxorubicin, and dacarbazine for advanced-stage classical Hodgkin lymphomaIFN-I promotes T-cell–independent immunity and RBC autoantibodies via modulation of B-1 cell subsets in murine SCDGenetic alteration of class I HLA in cutaneous T-cell lymphoma
Got a story idea for Bloodworks 101? Send us a text message In February of 2024, since it was Black History Month, we took a hard look at Sickle Cell Disease, a devastating genetic blood disorder that predominantly impacts people of African descent. In this Bloodworks 101 Best of 2024 episode, producer Helen Pitlick told us that Sickle Cell disease is an unfortunate reality for many members of Black communities, and at Bloodworks, we'd like to make it history. Dr. Raymond Adili of Bloodworks Research Institute thinks this is possible.
Imagine being 15 years old but having a body that shows signs of aging as if you are decades older. For some young people with sickle cell disease (SCD), this is a reality. A new study published in Volume 16, Issue 21 of Aging shows that SCD causes the body to age much faster than normal. The research not only explains why this happens but also points to new ways to help people with the disease live healthier, longer lives. What Is Sickle Cell Disease? SCD is a genetic condition that changes the shape of red blood cells. Instead of being round, like a doughnut, the cells become curved like a sickle (a farming tool). These misshapen cells struggle to move through blood vessels, often blocking blood flow and leading to pain, organ damage, and other health problems. Even with modern treatments, they can experience complications like those seen in older adults, such as weaker bones, frailty, and organ failure. In the study “Adolescents and young adults with sickle cell disease exhibit accelerated aging with elevated T-cell p16INK4a expression,” researchers wanted to understand why this happens and what it means for people with the disease. Full blog - https://aging-us.org/?p=6372 Paper DOI - https://doi.org/10.18632/aging.206152 Corresponding author - Samuel R. Wilson - samuel.wilson@med.unc.edu Video short - https://www.youtube.com/watch?v=QXVdxBikaqg Sign up for free Altmetric alerts about this article - https://aging.altmetric.com/details/email_updates?id=10.18632%2Faging.206152 Subscribe for free publication alerts from Aging - https://www.aging-us.com/subscribe-to-toc-alerts Keywords - aging, sickle cell disease, p16, adolescents, young adults About Aging-US The mission of the journal is to understand the mechanisms surrounding aging and age-related diseases, including cancer as the main cause of death in the modern aged population. The journal aims to promote 1) treatment of age-related diseases by slowing down aging, 2) validation of anti-aging drugs by treating age-related diseases, and 3) prevention of cancer by inhibiting aging. (Cancer and COVID-19 are age-related diseases.) Please visit our website at https://www.Aging-US.com and connect with us: Facebook - https://www.facebook.com/AgingUS/ X - https://twitter.com/AgingJrnl Instagram - https://www.instagram.com/agingjrnl/ YouTube - https://www.youtube.com/@AgingJournal LinkedIn - https://www.linkedin.com/company/aging/ Pinterest - https://www.pinterest.com/AgingUS/ Spotify - https://open.spotify.com/show/1X4HQQgegjReaf6Mozn6Mc MEDIA@IMPACTJOURNALS.COM
Cell and gene therapies have been grabbing news headlines, both for their potential to cure rare diseases and for their million-dollar price tags. Milliman pharmacists and healthcare experts explain why state Medicaid agencies are particularly affected and the strategies many are using for predicting uptake and covering these high costs. You can read the episode transcript on our website.
In this week's episode, unravelling follicular lymphoma subtypes. Researchers dissect the biological diversity of follicular lymphoma and introduce a new prognostic mode, that could change the way this B-cell neoplasm is subtyped and treated. Then, concerning stroke rate trends in sickle cell disease. A new report shows increasing rates of cerebrovascular events among people with SCD in California. Finally, procoagulant platelet activation promotes venous thrombosis. Investigators report finding procoagulant platelets in the circulation and in thrombi of patients and mice with DVT or PE. Featured Articles:Follicular lymphoma comprises germinal center–like and memory-like molecular subtypes with prognostic significanceRates of strokes in Californians with sickle cell disease in the post-STOP eraProcoagulant platelet activation promotes venous thrombosis
Sickle cell disease (SCD) is a condition of immense and multifarious clinical gravity causing acute pain, joint damage, anemia and risk of infection, stroke, delayed growth in children and adolescents — as well as long-term organ dysfunction. However, recent evolutions in treatment options offer promising novel and emerging therapeutics poised to truly revolutionize SCD care. On this episode of NP Pulse: The Voice of the Nurse Practitioner®, nurse practitioner (NP) specialists Sheryl Mitchell and Artangela Henry guide NPs to achieve the following learning objectives: Describe the epidemiologic patterns, pathophysiologic principles and robust patient burden of SCD. Examine current best practices for SCD diagnosis, highlighting the fundamental importance of early disease detection, characterization and linkage to treatment. Evaluate the established and evolving therapeutic landscape for SCD, with a focus on recent regulatory approvals and emerging trial data for novel agents. Design individualized, evidence-driven treatment plans for patients with SCD that mitigate disease complications and improve quality of life. Identify residual unmet needs in the SCD treatment paradigm and discuss the role of ongoing research and comprehensive, multidisciplinary care strategies in closing these gaps. This program and the accompanying clinical resource tool were made possible by a medical education grant from Vertex. Continuing education (CE) credit for this program may be claimed through Dec. 31, 2025. To claim credit for this program, log in to the CE Center, search for this program by name and complete the post-test and evaluation by entering the participation code Sickle24.
Breakthroughs in the Treatment of Sickle Cell Disease with guest Dr. Cece Calhoun, December 1, 2024
DISCLAMER >>>>>> The Ditch Lab Coat podcast serves solely for general informational purposes and does not serve as a substitute for professional medical services such as medicine or nursing. It does not establish a doctor/patient relationship, and the use of information from the podcast or linked materials is at the user's own risk. The content does not aim to replace professional medical advice, diagnosis, or treatment, and users should promptly seek guidance from healthcare professionals for any medical conditions. >>>>>> The expressed opinions belong solely to the hosts and guests, and they do not necessarily reflect the views or opinions of the Hospitals, Clinics, Universities, or any other organization associated with the host or guests. Disclosures: Ditch The Lab Coat podcast is produced by (Podkind.co) and is independent of Dr. Bonta's teaching and research roles at McMaster University, Temerty Faculty of Medicine and Queens University. Welcome back to "Ditch the Lab Coat," the podcast where we dive into complex healthcare topics with a scientific and skeptical lens. In this episode, our host Dr. Mark Bonta sits down with Dr. Akash Goel, an esteemed anesthesiologist and pain specialist, to explore the intricate world of chronic pain management.We'll delve into the prevalence of chronic conditions like stenosis, myofascial pain dysfunction, and sacroiliac joint dysfunction, particularly in older adults and women. Dr. Goel sheds light on the challenges of pain assessment and the often-overlooked patient experience of feeling disbelieved by family and caregivers.We'll discuss the limitations of traditional pain scales and the innovative tools reshaping pain treatment, such as quantitative sensory testing and real-time data from wearables. Dr. Goel's pioneering research, including a clinical trial with MDMA and ketamine for chronic pain management, will provide a glimpse into the future of pain therapy.Join us for an engaging conversation that highlights the evolving interface of AI, psychedelics, and psychotherapy in tackling chronic pain. Dr. Bonta and Dr. Goel also touch upon the broader challenges within the healthcare system and the exciting potential of new research and technological advancements. Stay tuned for insights that could change how we understand and treat chronic pain.06:40 - Doctors frequently encounter medically unexplained symptoms.08:57 - Chronic pain is diverse, commonly affecting older women.11:45 - Many patients feel disbelieved when reporting chronic pain.16:45 - Pain-related disability and interference assessed using specific scales.17:42 - Leveraging data to predict and manage chronic pain effectively.23:45 - Psychedelic compounds shown to aid in chronic pain psychotherapy.26:17 - Understanding chronic pain requires grouping patients into subcategories.28:48 - Chronic pain alters the brain and spinal cord's response mechanisms.33:58 - Emphasis on the need for quality placebo-controlled clinical trials to refine approaches.37:49 - Research into safe MDMA dosing and administration frequency.38:41 - 120mg of MDMA produces effects similar to 60mg of Ritalin.43:03 - Psychotherapy improves connection, access, and creates lasting therapeutic impacts.49:12 - Chronic pain's complexities inspire exploration of new treatments.50:16 - Psychedelics enhance psychotherapy, with Dr. Goel's research showing optimism.
Chantay Harrison-Crawford, a resilient 35 year-old woman, navigates life with Sickle Cell Anemia, Liver Disease, and various medical complications stemming from Sickle Cell Disease. Despite facing immense personal challenges, in 2019, she courageously founded Tilted Crown I Inc., a testament to her strength and determination. In 2023, Chantay confronted rock-bottom moments as she grappled with her own and her daughter's separate suicide attempts, triggered by toxic relationships within her family and circle of friends. Through adversity, she found a renewed purpose after a divine intervention during her second suicide attempt, leading her to dedicate herself to self-transformation and following a higher calling. As a mother, professional, wife, and entrepreneur, Chantay now channels her energy into fostering mental and emotional well-being. She initiated the "Royal Bible Study" program, aiming to empower women towards self-love and care, building on her commitment to serving others. Concurrently, she extended her compassion by offering shelter to two homeless individuals in Illinois. Chantay's past initiatives like "Wisdom Wednesday," documenting stories of Sickle Cell Warriors, and providing community support reflect her altruistic nature. Notably, she has also launched programs such as "Melanated Warrior" and "PMS - Pray and Manifesting Ish," emphasizing natural remedies for Sickle Cell Anemia and hosting relatable discussions through a weekly podcast. Embarking on a new chapter, she is set to release her first book under She Rises Studios, expected between November 2024 and January 2025, marking a significant milestone in her journey of resilience and empowerment. Her social media presence on Instagram as @Catica.33, TikTok as @dearcatica.333, and podcasts on IHeartRadio, Apple Podcasts, and Spotify under "Dear Catica.33" showcase her commitment to sharing experiences and insights.
In this episode of the Maximal Being podcast, Jacky P discusses sickle cell disease with Dr. Scott Peslak and Kyle Smith. Dr. Scott explains that sickle cell is a genetic disorder affecting hemoglobin, leading to stiff red blood cells that can block blood flow and cause pain, organ damage, and other complications. Kyle, a sickle cell warrior, emphasizes the importance of understanding one's sickle cell status and the need for better care models beyond emergency rooms. They highlight the role of infusion centers and the need for more sickle cell experts. Dr. Scott also discusses the potential of new therapies and the importance of national registries for better understanding and care of sickle cell patients. Topics- Sickle Cell Disease and Its Impact on Daily Life- Challenges in the Corporate World and Personal Experiences- Current and Emerging Treatments for Sickle Cell Disease- The Importance of Continuous Learning and Advocacy This week's guests are Dr. Scott Peslak, a physician scientist at the University of Pennsylvania, who caters to sickle cell and thalassemia patients. Kyle Smith, a nonprofit professional who owns Crescent Foundation, a nonprofit organization dedicated to serving individuals with sickle cell disease in the Philadelphia area. If you enjoy the podcast, would you please consider leaving a short review on Apple Podcasts/iTunes? It takes less than 60 seconds, and it really makes a differenceReach out to us at thedocmok@gmail.comOr https://www.thedocmok.com/ 5 FREE Gut Health Hacks (that your doctor won't tell you)5 Days of FREE videos delivered straight to your inbox.No obligation other than your email. I promise I won't send you constant useless garbage emails.*Plus we will send you an extra surprise*https://www.thedocmok.com/SocialsFacebook: https://www.facebook.com/maximalbeing/Jacky P's Facebook: https://www.facebook.com/profile.php?id=100043095913342Twitter: https://twitter.com/maximalbeingInstagram: https://www.instagram.com/maximalbeings/Jacky P's Instagram: https://www.instagram.com/jackyp_cfp/Pinterest: https://www.pinterest.com/maximalbeing/Linked'in: https://www.linkedin.com/in/maximal-being-13a5051a1/YouTube: https://www.youtube.com/channel/UCi7KVUF8U-gfhOE1KSNAqIg
Montez Davidson and her daughter and advocate, Kasara Davidson graciously share what it's like to live with sickle cell disease.
On this episode of Cheat Codes, Dr. Z and Dr. C are joined by Tabatha McGee, Executive Director of the Sickle Cell Foundation of Georgia. Tabatha shares her remarkable journey from systems engineer to leading the foundation, driven by a personal mission to enhance the lives of sickle cell warriors. The discussion delves into innovative programs like the Sickle Cell Sanctuary, holistic care initiatives, and the importance of community engagement and advocacy. An inspiring talk on leadership, resilience, and the transformative power of compassion in the fight against sickle cell disease. To visit the Sickle Cell Foundation of Georgia, click here. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community. TRANSPARENCY STATEMENT Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guest featured in this episode have been compensated for their time.
In this conversation, Nikita Taniparti interviews Dr. Carolyn Rouse, who gives us a preview of her forthcoming book. Based on almost a decade of fieldwork in Lake County, CA, her book looks at an economy of care as opposed to an economy of things, and how the relations that emerge through care work are linked to life expectancy and health outcomes. Dr. Rouse explains her interlocutor's search for freedom, and the narrative threads of hope that emerge to bind a community together. Today's guest is Dr. Carolyn Rouse. She is the Ritter Professor of Anthropology at Princeton University. Her work is wide-ranging and has focused on issues of race, religion, inequality, political and economic development, and more. Her first book, Engaged Surrender: African-American Women and Islam (2004), is an ethnography of African American Sunni muslim women in Los Angeles, CA – the book shows how the teachings of Islam give these women a sense of power and control over interpretations of gender, family, authority, and obligation. Her next book, Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease (2009) provides an examination of what it means that black Americans are sicker and die earlier than white Americans and the implications for health care in the United States. This book provides important framing to our discussion today, which is about Professor Rouse's forthcoming book on declining life expectancies of white Americans. Her book Televised Redemption: Black Religious Media and Racial Empowerment, co-authored with John Jackson Jr and Marla Frederick and published in 2016, argues that African American religious media has long played a key role in humanizing perceptions of African Americans by claiming that they are endowed by God with the same gifts of goodness and reason as whites, if not more, thereby legitimizing black Americans' rights to citizenship in the United States. As a filmmaker, Prof. Rouse has also produced and directed numerous documentaries, including Chicks in White Satin (1994), Purification to Prozac: Teaching Mental Illness in Bali (1998), Listening as a Radical Act: World Anthropologies and the Decentering of Western Thought (2015), and more. She is dedicated to expanding forms of visual anthropology, a theme that we'll touch upon a bit later in this episode. Her forthcoming book builds on her decades of research on racial disparities in health and medicine, development and policy efforts, and ongoing political and economic shifts in the US. The book project began when she visited Lake Country in Northeast California in 2016 to investigate research claims being made at the time that showed that life expectancies for white Americans was declining. Today she'll talk about that ongoing research and how it is linked to the emergence of hope, trust, and community. Links: https://anthropology.princeton.edu/people/faculty/carolyn-rouse https://www.epicpeople.org/racist-by-design/ .player4979 .plyr__controls, .player4979 .StampAudioPlayerSkin{ border-radius: px; overflow: hidden; } .player4979{ margin: 0 auto; } .player4979 .plyr__controls .plyr__controls { border-radius: none; overflow: visible; } .skin_default .player4979 .plyr__controls { overflow: visible; } Your browser does not support the audio element.
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On this episode, Dr. Z and Dr. C welcome Dr. Julia Xu, a rising star in the field of sickle cell disease. Dr. Xu shares her inspiring journey from Omaha, Nebraska, to her current role at the University of Pittsburgh. The discussion covers her extensive background in global health, her research on anemia in sickle cell disease, and the impactful mentors who have shaped her career. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community. TRANSPARENCY STATEMENT Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guest featured in this episode have been compensated for their time.
FAMILY DISPUTE OVER MY MOMS ESTATE In this special episode we jby Jenica & A Star, who are both Sickle Cell advocates, to teach and educate us on what we can do to help raise awareness of Sickle Cell. As always, please comment below with your thoughts and don't forget to Like, Share And Subscribe
In addition to her academic role, Dr. Ononogbu serves as a Board-Certified Hematology/Oncology Clinical Pharmacy Specialist at a Comprehensive Sickle Cell Center, where she provides specialized care and treatment for complex patient cases. Her clinical practice informs her research and offers practical solutions to improve patient outcomes in SCD care.Dr. Ononogbu is also deeply committed to mentoring future pharmacy leaders. She co-founded Pharmacy Initiative Leaders (PILs), a non-profit organization that helps pharmacy students secure post-doctoral residencies and fellowships, with a special emphasis on promoting diversity within the pharmacy workforce. A strong advocate for diversity, equity, and inclusion (DEI) in healthcare, Dr. Ononogbu is dedicated to ensuring equitable access to quality care, improving patient-provider communication, and fostering cultural competency in clinical settings. Her work continues to shape the future of pharmacy and improve care for those affected by sickle cell disease.Today's podcast is available to pharmacists and pharmacy technicians for CE credit and is worth 0.5 credits.To register for CE credit, please visit:https://www.lecturepanda.com/r/SCDOnDemand The objectives of today's podcast are:Discuss Sickle Cell Disease including pathophysiology as well as the history and timeline of SCD treatment.Interpret current challenges in SCD management and practical strategies to help improve care. Onye has no relevant financial relationships to disclose.
Two-time Emmy and Three-time NAACP Image Award-winning television Executive Producer Rushion McDonald interviewed Kier "Junior" Spates. Co-Host of Steve Harvey Morning Show and founded Kier's Hope to provide underprivileged individuals who suffer from Sickle Cell Disease to ensure they receive the medical, physical, and emotional attention they deserve. Suffering from sickle cell disease in silence is not uncommon in the African-American Community as there is a lack of knowledge of the disease. So, he created the Kier's Hope Foundation. The annual Kier's Hope 5K Fun Run and Walk and Junior Claus is an opportunity for families and those with sickle cell disease to gather and learn more about new treatments, spread awareness, and increase community engagement. Sickle Cell Disease is misunderstood as being contagious, an automatic death sentence, and that people with SCD can't do what "normal" people do! Kier is changing that narrative. #AMI #BEST #SHMS #STRAW See omnystudio.com/listener for privacy information.
Two-time Emmy and Three-time NAACP Image Award-winning television Executive Producer Rushion McDonald interviewed Kier "Junior" Spates. Co-Host of Steve Harvey Morning Show and founded Kier's Hope to provide underprivileged individuals who suffer from Sickle Cell Disease to ensure they receive the medical, physical, and emotional attention they deserve. Suffering from sickle cell disease in silence is not uncommon in the African-American Community as there is a lack of knowledge of the disease. So, he created the Kier's Hope Foundation. The annual Kier's Hope 5K Fun Run and Walk and Junior Claus is an opportunity for families and those with sickle cell disease to gather and learn more about new treatments, spread awareness, and increase community engagement. Sickle Cell Disease is misunderstood as being contagious, an automatic death sentence, and that people with SCD can't do what "normal" people do! Kier is changing that narrative. #AMI #BEST #SHMS #STRAW Support the show: https://www.steveharveyfm.com/See omnystudio.com/listener for privacy information.
Two-time Emmy and Three-time NAACP Image Award-winning television Executive Producer Rushion McDonald interviewed Kier "Junior" Spates. Co-Host of Steve Harvey Morning Show and founded Kier's Hope to provide underprivileged individuals who suffer from Sickle Cell Disease to ensure they receive the medical, physical, and emotional attention they deserve. Suffering from sickle cell disease in silence is not uncommon in the African-American Community as there is a lack of knowledge of the disease. So, he created the Kier's Hope Foundation. The annual Kier's Hope 5K Fun Run and Walk and Junior Claus is an opportunity for families and those with sickle cell disease to gather and learn more about new treatments, spread awareness, and increase community engagement. Sickle Cell Disease is misunderstood as being contagious, an automatic death sentence, and that people with SCD can't do what "normal" people do! Kier is changing that narrative. #AMI #BEST #SHMS #STRAW See omnystudio.com/listener for privacy information.
Two-time Emmy and Three-time NAACP Image Award-winning television Executive Producer Rushion McDonald interviewed Kier "Junior" Spates. Co-Host of Steve Harvey Morning Show and founded Kier's Hope to provide underprivileged individuals who suffer from Sickle Cell Disease to ensure they receive the medical, physical, and emotional attention they deserve. Suffering from sickle cell disease in silence is not uncommon in the African-American Community as there is a lack of knowledge of the disease. So, he created the Kier's Hope Foundation. The annual Kier's Hope 5K Fun Run and Walk and Junior Claus is an opportunity for families and those with sickle cell disease to gather and learn more about new treatments, spread awareness, and increase community engagement. Sickle Cell Disease is misunderstood as being contagious, an automatic death sentence, and that people with SCD can't do what "normal" people do! Kier is changing that narrative. #AMI #BEST #SHMS #STRAW See omnystudio.com/listener for privacy information.
Ted Love, chairman of BIO, and Dr. Alan Anderson, executive director of Sickle Forward, on how to improve quality of life for sickle cell disease patients around the world.
In this special “Lunch and Learn” session sponsored by the Agios Diversity Council, Dr. Simone Uwan shares her inspiring journey living with and advocating for sickle cell disease. Dr. Uwan discusses her background, achievements in medicine and advocacy, and her personal experiences with misdiagnosis and the challenges faced by sickle cell patients. Highlighting critical insights from her books, she emphasizes the importance of medical management, patient empowerment, and the need for diverse treatment options in fighting this disease. For more information, visit the Sickle Cell Medical Advocacy website. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community. TRANSPARENCY STATEMENT Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guest featured in this episode have been compensated for their time.
Guest: ✨ Dr. Neal Baer, Co-Director, Master's Degree Program in Media, Medicine, and Health, Harvard Medical SchoolOn LinkedIn | https://www.linkedin.com/in/neal-baer/On Twitter | https://x.com/NealBaerOn Facebook | https://www.facebook.com/neal.baer.75/On Instagram | https://www.instagram.com/nealbaer/____________________________Host: Marco Ciappelli, Co-Founder at ITSPmagazine [@ITSPmagazine] and Host of Redefining Society PodcastOn ITSPmagazine | https://www.itspmagazine.com/itspmagazine-podcast-radio-hosts/marco-ciappelli_____________________________This Episode's SponsorsBlackCloak
This week, we have an INCREDIBLE episode for you. We welcome Titilope Fasipe, MD, PhD, who not only is the Co-Director of the Sickle Cell and Thalassemia Program at Texas Children's and an Assistant Professor in the Department of Pediatrics at the Baylor College of Medicine, she herself also has sickle cell disease! Dr. Fasipe takes us through her life story, from childhood to now. Conducting this interview was such an eye-opening experience for us, and we hope that her message resonates with you when you care for your patients with sickle cell disease. Contents: - What it is like growing up with sickle cell disease?- Pearls to ensure that our practice provides excellent care for our patients with SCD- Important resources when caring for patients****Have some time and want to make some extra money? Get paid to participate in market research surveys: https://affiliatepanel.members-only.online/FOC_24?utm_campaign=FOC&utm_source=email&utm_medium=email** Want to review the show notes for this episode and others? Check out our website: https://www.thefellowoncall.com/our-episodesLove what you hear? Tell a friend and leave a review on our podcast streaming platforms!Twitter: @TheFellowOnCallInstagram: @TheFellowOnCallListen in on: Apple Podcast, Spotify, and Google Podcast
In this week's episode, we discuss the management of sickle cell disease in the chronic setting. This is a follow up to episode 111 where we discussed acute management of SCD. And furthermore, this is also in addition to our prior discussion about long-term chronic complications from SCD in episode 110. We highly recommend checking out these prior episodes if you haven't done so already!Contents: - Use of hydroxyurea in SCD management- Newer adjunctive therapies for SCD management - Perioperative management ****Have some time and want to make some extra money? Get paid to participate in market research surveys: https://affiliatepanel.members-only.online/FOC_24?utm_campaign=FOC&utm_source=email&utm_medium=email** Want to review the show notes for this episode and others? Check out our website: https://www.thefellowoncall.com/our-episodesLove what you hear? Tell a friend and leave a review on our podcast streaming platforms!Twitter: @TheFellowOnCallInstagram: @TheFellowOnCallListen in on: Apple Podcast, Spotify, and Google Podcast
In this week's episode, we discuss the management of acute complications of sickle cell disease including acute pain episodes and acute chest syndrome as well as a discussion of hyperhemolytic syndrome.Contents: - How to manage patients with sickle cell disease presenting for acute pain crises- How to approach management of acute chest syndrome- What is hyperhemolytic crisis?- What is splenic and hepatic sequestration syndrome? **This episode is sponsored by our global research partners! Have some time and want to make some extra money? Get paid to participate in market research surveys: https://affiliatepanel.members-only.online/FOC_24?utm_campaign=FOC&utm_source=email&utm_medium=email ** Want to review the show notes for this episode and others? Check out our website: https://www.thefellowoncall.com/our-episodesLove what you hear? Tell a friend and leave a review on our podcast streaming platforms!Twitter: @TheFellowOnCallInstagram: @TheFellowOnCallListen in on: Apple Podcast, Spotify, and Google Podcast