POPULARITY
9 episodes with Scid
9 episodes with Scid
9 episodes with Scid
9 episodes with Scid
7 episodes with Scid
4 episodes with Scid
7 episodes with Scid
3 episodes with Scid
2 episodes with Scid
Send us a textThe Structured Clinical Interview for DSM-5 (SCID-5) stands as a cornerstone in modern mental health assessment, offering clinicians and researchers a sophisticated tool that marries systematic evaluation with clinical flexibility. This semi-structured interview masterfully balances the precision of standardized questioning with the nuance of open-ended exploration, allowing mental health professionals to gather essential diagnostic information while honoring each client's unique lived experience. The approach creates space for clients to describe their symptoms in their own words, ensuring both diagnostic accuracy and therapeutic rapport.Recognizing diverse professional needs, the SCID-5 comes in three specialized formats: the streamlined Clinician Version (SCID-5-CV) for daily practice, the comprehensive Research Version (SCID-5-RV) for academic studies, and the rigorous Clinical Trials Version (SCID-5-CT) for standardized research protocols. The clinician version includes ten meticulously organized diagnostic modules covering 39 common mental health conditions, from major depression and anxiety disorders to substance use problems and ADHD, while screening for 17 additional disorders.The interview process unfolds naturally, beginning with an introductory conversation that establishes rapport while gathering crucial background information. As the assessment progresses, clinicians follow decision trees that mirror expert diagnostic reasoning, systematically evaluating potential diagnoses based on DSM-5 criteria. This methodical approach empowers professionals to make evidence-based diagnostic determinations while remaining responsive to new information that may emerge throughout treatment.Join us as we explore how this remarkable diagnostic tool transforms mental health assessment, creating a bridge between standardized criteria and clinical wisdom that ultimately leads to better outcomes for those seeking care. Subscribe now for more insights into the cutting-edge approaches shaping modern mental healthcare.If you need to study for your national licensing exam, try the free samplers at: LicensureExamsThis podcast is not associated with the NBCC, AMFTRB, ASW, ANCC, NASP, NAADAC, CCMC, NCPG, CRCC, or any state or governmental agency responsible for licensure.
Guest: Jordan Orange, MD, PhD Guest: Joshua Milner, MD Guest: Eric Silver, MD Guest: Steven Lobritto, MD On this episode of Advances in Care, host Erin Welsh explores the story behind the GUARDIAN study, where thousands of newborn babies have been screened against rare disease by sequencing their genes, and looking for more conditions than any of the current standard screening panels. First, she hears from Dr. Jordan Orange, Physician-in-Chief at Morgan Stanley Children's Hospital at NewYork-Presbyterian and Columbia, about why genetic testing is a promising way of not only catching treatable rare diseases in infants, but also expanding health equity and medical resources to marginalized populations. Erin also hears from Dr. Josh Milner, a pediatric immunologist who treated a patient with a rare form of SCID, or severe combined immune deficiency, also known as bubble boy disease that was detected in the GUARDIAN screening panel. SCID is a disease that typically occurs in 1 of 50,000 babies. But GUARDIAN caught two cases within the first 10,000 babies involved in the program, indicating that the rate of the disease might be higher than expected, and that the most accurate way to detect is through genetic screening. Dr. Steven Lobritto, a pediatric gastroenterologist, also weighs in on how genetic screening can help identify Wilson's disease, a copper storage …
In this episode of The Moss Report, Ben Moss and Dr. Ralph W. Moss explore the science and tradition behind ginger's role in cancer prevention and care. From leukemia stem cells to chemotherapy-induced nausea, ginger shows remarkable promise backed by real-world use and peer-reviewed research. Learn how to use roasted ginger powder, what sets ginger apart from turmeric, and why Dr. Moss believes it's a cornerstone of integrative cancer support. Products Mentioned Great Value Organic Turmeric Powder: https://amzn.to/4hZLT8K Frontier Organic Ginger Powder: https://amzn.to/42rZsJE Garden of Life Golden Milk Powder: https://amzn.to/4ce9elW Gaia Herbs Golden Milk: https://amzn.to/42jSYvb Consumerlab Review of Ginger Products: https://www.consumerlab.com/reviews/ginger-supplement-review/ginger/?search=Ginger About Prof. Tsvee Lapidot https://bioforumconf.com/6th-international-meeting-of-the-israel-stem-cell-/820-prof-tsvee-lapidot About John Dick, PhD https://www.cdnmedhall.ca/laureates/johndick Important Links “A comprehensive self-help plan for cancer includes medicinal mushrooms. They are indispensable”. – Ralph W. Moss, PhD The Moss Method Mushroom Formula → https://mycolife.us For more information on cancer-fighting foods and supplements, please visit our website: https://www.themossreport.com Get The Moss Method Book → https://www.amazon.com/gp/product/1881025799/ Moss Report Treatment Guides → https://themossreport.store/guides Dr. Moss' library of previous books → https://themossreport.store/books/ Explore Townsend Letter → https://www.townsendletter.com The deep dive 'Clinic Conversations' between Dr. Moss and Integrative Oncologists from around the world are available at → https://themossreport.com/doctors-clinics The Center for Integrative Oncology - https://www.intonc.org - is dedicated to exploring cancer care worldwide, bringing you in-depth reporting and insights through The Moss Report. As a 501(c)(3) nonprofit, the CIO relies on public support to continue this vital work. Please consider making a donation to help uncover and share current approaches and resources in cancer treatment. Cited Resources • Chueahongthong F, Tima S, Chiampanichayakul S, et al. Co-Treatments of Edible Curcumin from Turmeric Rhizomes and Chemotherapeutic Drugs on Cytotoxicity and FLT3 Protein Expression in Leukemic Stem Cells. Molecules. 2021 Sep 24;26(19):5785. doi: 10.3390/molecules26195785. PMID: 34641328; PMCID: PMC8510311. https://pubmed.ncbi.nlm.nih.gov/34641328 • Crichton M, Marshall S, Isenring E, et al. Effect of a Standardized Ginger Root Powder Regimen on Chemotherapy-Induced Nausea and Vomiting: A Multicenter, Double-Blind, Placebo-Controlled Randomized Trial. J Acad Nutr Diet. 2024 Mar;124(3):313-330.e6. doi: 10.1016/j.jand.2023.09.003. Epub 2023 Sep 10. PMID: 37699474. https://pubmed.ncbi.nlm.nih.gov/37699474 • Lapidot T, Sirard C, Vormoor J, et al. A cell initiating human acute myeloid leukaemia after transplantation into SCID mice. Nature. 1994 Feb 17;367(6464):645-8. doi: 10.1038/367645a0. PMID: 7509044. https://pubmed.ncbi.nlm.nih.gov/7509044 • Panyajai P, Viriyaadhammaa N, Chiampanichayakul S, et al. Anticancer and cancer preventive activities of shogaol and curcumin from Zingiberaceae family plants in KG-1a leukemic stem cells. BMC Complement Med Ther. 2025 Feb 28;25(1):87. doi: 10.1186/s12906-025-04829-7. PMID: 40022126; PMCID: PMC11869560. https://pubmed.ncbi.nlm.nih.gov/40022126 • Shidfar F, Rajab A, Rahideh T, et al. The effect of ginger (Zingiber officinale) on glycemic markers in patients with type 2 diabetes. J Complement Integr Med. 2015 Jun;12(2):165-70. doi: 10.1515/jcim-2014-0021. PMID: 25719344. https://pubmed.ncbi.nlm.nih.gov/25719344
In this heartfelt episode, Stephanie Mitton sits down with Kyla Thompson, mother of the inspiring Bella Brave, who passed away in 2024 at age 10. Kyla shares her journey of love, loss, and resilience, reflecting on Bella's impact on social media and the challenges of navigating the medical system.Kyla discusses the power of vulnerability in advocacy, finding purpose through charity and podcasting, and balancing grief while honoring Bella's legacy. She also highlights the support from unexpected figures like Ryan Reynolds and the importance of self-care while helping others.Kyla's story is a powerful reminder of the strength in community, the healing power of sharing experiences, and the importance of finding joy even in tough times. Join us for an inspiring conversation on motherhood, advocacy, and the lasting impact of a brave spirit.Our Patreon: https://www.patreon.com/womendontdothatRecommend guests: https://www.womendontdothat.com/Our Patreon: https://www.patreon.com/womendontdothatRecommend guests: https://www.womendontdothat.com/How to find WOMENdontDOthat:Patreonhttps://www.patreon.com/womendontdothatInstagram - http://www.instagram.com/womendontdothat/TikTok- http://www.tiktok.com/@womendontdothatBlog- https://www.womendontdothat.com/blogPodcast- https://www.womendontdothat.com/podcastNewsletter- https://www.beaconnorthstrategies.com/contactwww.womendontdothat.comYouTube - http://www.youtube.com/@WOMENdontDOthatHow to find Stephanie Mitton:Twitter/X- https://twitter.com/StephanieMittonLinkedIn - https://www.linkedin.com/in/stephaniemitton/beaconnorthstrategies.comTikTok- https://www.tiktok.com/@stephmittonInstagram- https://www.instagram.com/stephaniemitton/Interested in sponsorship? Contact us at hello@womendontdothat.comOur Latest Blog:https://www.womendontdothat.com/post/our-first-beacon-north-christmas-party-a-reflection-on-growth-and-gratitude
David Vetter died at age twelve after spending his entire life in a bubble. Nicknamed “The Bubble Boy,” David was born with severe combined immunodeficiency (SCID). His parents had lost their first son to the disease and were determined to protect their second-born. To prolong his life, NASA engineers designed a plastic protection bubble as well as a spacesuit so his parents could hold David in the outside world. Oh, how we all long to protect those we love! King David was wronged by Nabal, the foolish husband of Abigail. In a rogue moment, David sought revenge by his own hands. Abigail rushed to meet him with a wise reminder, “Even though someone is pursuing you to take your life, the life of my lord will be bound securely in the bundle of the living by the Lord your God” (1 Samuel 25:29). The concept of “bundle” conveys the idea of gathering up valuable items so the owner can protectively carry them. Abigail reminded David that God wanted to carry him in a protective bundle. He was safest in God’s hands, rather than in his own. “My lord will not have on his conscience the staggering burden of needless bloodshed or having avenged himself” (v. 31). We do well to work to protect others when they need it, but it’s only in God’s perfect care that they’re truly safe.
In this episode, we review the high-yield topic of Severe Combined Immunodeficiency Disorder (SCID) from the Immunology section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets
Gloria Yiu, M.D., Ph.D., delves into the transformative potential of genetic editing technologies in addressing rare immune disorders, with a focus on CD3δ severe combined immunodeficiency (SCID)—a condition characterized by impaired T-cell development and severely compromised immune function. Leveraging her expertise as a physician-scientist, Yiu explores how CRISPR and other precision gene-editing tools can correct genetic mutations at the cellular level, potentially restoring T-cell production and immune resilience in patients with CD3δ SCID. Her presentation underscores the challenges and breakthroughs in treating such life-threatening conditions, emphasizing the role of interdisciplinary research, clinical innovation, and ethical considerations in advancing the frontiers of personalized medicine. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40245]
Gloria Yiu, M.D., Ph.D., delves into the transformative potential of genetic editing technologies in addressing rare immune disorders, with a focus on CD3δ severe combined immunodeficiency (SCID)—a condition characterized by impaired T-cell development and severely compromised immune function. Leveraging her expertise as a physician-scientist, Yiu explores how CRISPR and other precision gene-editing tools can correct genetic mutations at the cellular level, potentially restoring T-cell production and immune resilience in patients with CD3δ SCID. Her presentation underscores the challenges and breakthroughs in treating such life-threatening conditions, emphasizing the role of interdisciplinary research, clinical innovation, and ethical considerations in advancing the frontiers of personalized medicine. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40245]
Gloria Yiu, M.D., Ph.D., delves into the transformative potential of genetic editing technologies in addressing rare immune disorders, with a focus on CD3δ severe combined immunodeficiency (SCID)—a condition characterized by impaired T-cell development and severely compromised immune function. Leveraging her expertise as a physician-scientist, Yiu explores how CRISPR and other precision gene-editing tools can correct genetic mutations at the cellular level, potentially restoring T-cell production and immune resilience in patients with CD3δ SCID. Her presentation underscores the challenges and breakthroughs in treating such life-threatening conditions, emphasizing the role of interdisciplinary research, clinical innovation, and ethical considerations in advancing the frontiers of personalized medicine. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40245]
Gloria Yiu, M.D., Ph.D., delves into the transformative potential of genetic editing technologies in addressing rare immune disorders, with a focus on CD3δ severe combined immunodeficiency (SCID)—a condition characterized by impaired T-cell development and severely compromised immune function. Leveraging her expertise as a physician-scientist, Yiu explores how CRISPR and other precision gene-editing tools can correct genetic mutations at the cellular level, potentially restoring T-cell production and immune resilience in patients with CD3δ SCID. Her presentation underscores the challenges and breakthroughs in treating such life-threatening conditions, emphasizing the role of interdisciplinary research, clinical innovation, and ethical considerations in advancing the frontiers of personalized medicine. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40245]
Gloria Yiu, M.D., Ph.D., delves into the transformative potential of genetic editing technologies in addressing rare immune disorders, with a focus on CD3δ severe combined immunodeficiency (SCID)—a condition characterized by impaired T-cell development and severely compromised immune function. Leveraging her expertise as a physician-scientist, Yiu explores how CRISPR and other precision gene-editing tools can correct genetic mutations at the cellular level, potentially restoring T-cell production and immune resilience in patients with CD3δ SCID. Her presentation underscores the challenges and breakthroughs in treating such life-threatening conditions, emphasizing the role of interdisciplinary research, clinical innovation, and ethical considerations in advancing the frontiers of personalized medicine. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40245]
Gloria Yiu, M.D., Ph.D., delves into the transformative potential of genetic editing technologies in addressing rare immune disorders, with a focus on CD3δ severe combined immunodeficiency (SCID)—a condition characterized by impaired T-cell development and severely compromised immune function. Leveraging her expertise as a physician-scientist, Yiu explores how CRISPR and other precision gene-editing tools can correct genetic mutations at the cellular level, potentially restoring T-cell production and immune resilience in patients with CD3δ SCID. Her presentation underscores the challenges and breakthroughs in treating such life-threatening conditions, emphasizing the role of interdisciplinary research, clinical innovation, and ethical considerations in advancing the frontiers of personalized medicine. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40245]
In this episode of The Vinny Roc Podcast, we welcome Myles Temple to discuss his inspiring journey, resilience, and aspirations in the film industry. Myles shares his unique perspective as a two-time cancer survivor and three-time bone marrow transplant recipient, overcoming severe combined immunodeficiency (SCID) and other challenges to pursue his dreams in storytelling, directing, and filmmaking. Together, Vinny and Myles explore the transformative power of life's obstacles, how military experiences shaped confidence, and why embracing vulnerability can open the door to creative success. They also dive into the art of acting, the importance of mentorship, and Myles' passion for directing, including his insights on blending the written and visual mediums into compelling stories. Whether you're an aspiring filmmaker, actor, or simply looking for inspiration, this episode offers valuable lessons in perseverance, creativity, and the pursuit of dreams. Sponsors: - Core Medical Group: Specializing in testosterone replacement therapy for men and women. - Modern Gun School: Learn to become an armorer online, GI Bill & Voc Rehab eligible. - Grim Blades: American-made straight razors for a clean, professional shave.
ב- 21 בספטמבר 1971, ביוסטון טקסס, נולד ילד שישנה את מדע הרפואה ביותר מאופן אחד. דיויד פיליפ ווטר, ילד חייכן ומבריק, הוא ילד הבועה הראשון.בחלק ב' זה של השידור החוזר, נשמע מפרופסור רז סומך על המחלה הגנטית הנדירה ממנה סבל דיויד, SCID. פרופסור סומך ידבר על פריצת הדרך בטיפול במחלה, וגם על המורכבות של הטיפול בה על רקע חיינו באזור.
ב- 21 בספטמבר 1971, ביוסטון טקסס, נולד ילד שישנה את מדע הרפואה ביותר מאופן אחד. דיויד פיליפ ווטר, ילד חייכן ומבריק, הוא ילד הבועה הראשון. המחלה הגנטית הנדירה ממנה סבל, SCID, היא נושא שני הפרקים הבאים של עושים רפואה.מופיעים בפרק: פרופסור רז סומך (אימונולוג ילדים), ודוקטור מיכל טנצר (פסיכוליגית קלינית).
In July 2024, Daylon and Arun attended the International Society for Stem Cell Research's (ISSCR) annual meeting in Hamburg, Germany, and recorded daily episodes discussing highlights of the previous 24 hours. Here is the final of four episodes from the meeting. Sessions focused on stem cell research in space, regulatory and ethical considerations for human embryo models, and developing therapies for SCID, epilepsy, and spinal cord injury. Daylon and Arun also discussed work on salivary gland organoids and patient advocacy in Parkinson's disease research.
During the Iraq War, a little known detachment played a big role in fighting terrorist actions and saving lives of our service members in Baghdad and other locations in Iraq. The Strategic Counter Intelligence Directorate (SCID) made up of Army CI, NCIS and Air Force OSI agents and a group of patriotic Army National Guard and DOD contractors diligently fought a secret war against insurgency and saved lives and provided crucial intelligence identifying our enemies (Jaish Al Mahdi, Al Qaeda and others) operating in the theater of operations. Ultimately, the downfall of this highly successful operation would come from within our own government through politics and bureaucracy. Former Army Major Dave Pounder joins me to discuss our time with the SCID and the "good times" in Baghdad. --- Support this podcast: https://podcasters.spotify.com/pod/show/lee-clements33/support
Explore the critical aspects of PTSD assessment in our latest episode, 'Among Therapists: Practical Tips. ' Delve into thorough evaluation techniques for patients with trauma issues, focusing on identifying the index trauma and assessing the severity of PTSD symptoms. Gain insights into using essential tools like CAPS-5, SCID-5, and PCL-5 to understand comorbid disorders comprehensively. Learn how to effectively choose candidates for prolonged exposure therapy and navigate complex clinical scenarios. Tune in now to master the art of measurement-based therapy and its significant impact on treating trauma survivors. Faculty: Barbara Rothbaum, Ph.D. Host: Jessica Díaz, M.D. Script Editor: Anderson Garcia, Ph.D. Learn more about: Trauma Training Pathway: Proven ACT, DBT, and Prolonged Exposure Techniques Prefer to read? Here's a text version: Assessing PTSD: Measurement-Based Therapy.
This week, Mandy (Kate is sick!) chats to Louise, Pea mum to 3-year-old Isabelle who lives with Severe Combined Immunodeficiency (SCID) or the ‘bubble baby condition' - a life-threatening genetic condition in which affected babies are unable to fight bacterial, viral or fungal infections.Louise shares her story of Isabelle's diagnosis thanks to the quick and insightful actions of two supportive paediatricians, and her months-long hospital stay in a positive pressure room, all while the COVID-19 pandemic took hold. Isabelle underwent a lifesaving stem cell transplant at 7 months of age and was able to return home. Isabelle's condition also led to hearing loss, and she's also been subsequently diagnosed with autism and global developmental delay. Louise is proud to have successfully advocated for SCID to be added to Australia's Newborn Bloodspot Screening Panel and has ensured that SCID is now detected, diagnosed and treated shortly after birth in every state in Australia, before a baby can become critically ill or pass away. Louise also sits on the Board of the Immune Deficiencies Foundation of Australia, supports other families who have a child born with SCID and is an advocate and peer mentor to families living with any immune deficiencies. Thank you for sharing your story with us Louise! Plus: Listen to our Spotify playlist –Too Peas: Songs Our Guest Peas LoveJoin our Facebook HangoutFind us on YouTubeBuy our book The Invisible Life Of Us!Leave us a speakpipe Help spread the love for Too Peas by rating and reviewing us!Melbourne forecast for Thursday March 14 - Shower or two, 22 degrees Hosted on Acast. See acast.com/privacy for more information.
In this episode, host Shikha Jain, MD, speaks with St. Jude's Steven Gottschalk, MD, and Paulina Velasquez, MD, about the evolution of bone marrow transplant and cell therapy, increasing accessibility to CAR T-cell therapy and more. • Welcome to another exciting episode of Oncology Overdrive :58 • About Gottschalk 1:12 • About Velasquez 1:57 • The interview 2:23 • About Gottschalk's journey and how he ended up in this space. 2:56 • About Velasquez's journey and how she ended up in this space. 4:16 • Gottschalk on the history of severe combined immune deficiency (SCID), or “bubble boy disease” and his work on developing the cure. 5:04 • When you think about what we have learned about immunotherapy, immune systems and cancer treatment over the last fifty years, did you think we would be where we are today in cancer care? 7:27 • How have CAR T-cells transformed health care so far, and what will they do for the future? 8:53 • What are you currently working on, and what excites you most about that work? 9:57 • Do you think that we can expect a transformation in CAR T-cells being used in solid tumors in the future? 12:34 • How do we prioritize enhanced CAR T-cells in clinical studies? 13:38 • How can we address the challenges facing the delivery of CAR T-cell therapy and make it more accessible to patients? 17:04 • Where do you see CAR T-cell therapy going in cancer care and in immunodeficiencies? 21:03 • If you were interviewed again in five years, what do you think you will be doing then, and what do you think we will be talking about? 25:42 • If someone could only listen to the last two minutes of this episode, what would you want them to take away? 30:31 • How to contact Gottschalk and Velasquez 31:22 • Thanks for listening 31:51 Stephen Gottschalk, MD, St. Jude Department of bone marrow transplantation and cellular therapy chair, focuses his research on cancer immunotherapy, cell therapy and stem cell transplantation. The Gottschalk laboratory focuses on Epstein-Barr virus-specific T cells for treating EBV-associated cancers and using genetically modified T cells for cancer immunotherapy. Paulina Velasquez, MD, St. Jude Department of bone marrow transplantation and cellular therapy, has made significant contributions to the field of immunotherapy, developing novel T-cell therapy platforms for pediatric hematological malignancies. Her team is pursuing projects that address antigen discovery, tumor immune evasion, persistence and efficacy of CAR T cells and cell-cell interaction within the tumor microenvironment. We'd love to hear from you! Send your comments/questions to Dr. Jain at oncologyoverdrive@healio.com. Follow Healio on X, formerly known as Twitter, and LinkedIn: @HemOncToday and https://www.linkedin.com/company/hemonctoday/. Follow Dr. Jain on X, formerly known as Twitter: @ShikhaJainMD. Gottschalk can be reached via email stephen.gottschalk@stjude.org. Velasquez can be reached via email paulina.velasquez@stjude.org. Disclosures: Jain reports no relevant financial disclosures. Gottschalk reports he is co-inventor on patents and patent applications in the fields of cell or gene therapy for cancer, a member of the scientific advisory board of Be Biopharma and CARGO, and the data and safety monitoring board (DSMB) of Immatics and has received honoraria from TESSA Therapeutics. Velasquez reports patent applications in the field of T-cell immunotherapy.
Dr. Don Kohn of UCLA provides an update on emerging gene therapy treatments for ADA-SCID. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
This week is a short but sweet episode, starting off with a weekend recap of Libby's anniversary dinner at Limani in Chestnut Hill. Laura has us all laughing about her story about getting pulled over after peeing her pants driving back from Boston! And to top it off, she had a full CO2 mask on after visiting Jenny Grande at Meredith Lane Aesthetics for a Moxi laser treatment, a Biopeel and a little BBL around her chin. We touch on kids in sports and some fun upcoming plans. We discuss a few "hot takes" on whether you should you be tracking your partner, and answered a question from one of our listeners about concerns over her boyfriends frequent late night outings. Liz tells us all about how she recently discovered a SCID advocate, @bekaherway, and is very interested in becoming a bone marrow transplant through @bethematch, which could potentially save lives or give longevity to those in need
In a world where life's challenges can seem overwhelming, Bella Brave and her unwavering spirit stand as a testament to the power of courage and love. Born with not just one but three rare conditions—Hirschsprungs, SCID, and dwarfism—Bella's journey has been an extraordinary one, defying the odds and inspiring all who cross her path.From the very beginning, Bella's life took an unexpected turn, confronting her and her family with medical complexities that few could fathom. Kyla, her mother, a former teacher, found herself stepping into the role of a medical mom, dedicating her life to providing the care and support Bella needed. With each passing year, the journey became more challenging, but Kyla's love for her daughter only grew stronger.Bella's story is one of resilience and bravery, a testament to the incredible strength that can be found in the tiniest hearts. Despite the numerous hospitals stays, countless medical procedures, and 27 surgeries she has faced, Bella remains an unwavering source of light and hope. Her smile, infectious and heartwarming, radiates joy even in the face of adversity.As the years passed, Bella's medical needs demanded more attention, and Kyla had to make the heart-wrenching decision to leave her teaching career behind. The choice was clear—she would be there for Bella every step of the way, ensuring that her daughter's life was filled with love, comfort, and unwavering support.But the journey didn't just consist of medical battles; it was also a tale of love and the unbreakable bond between a mother and her child. Kyla's dedication to Bella went beyond caregiving; she became her daughter's advocate, her source of strength, and her pillar of hope. Together, they faced the unknown with courage, and Kyla's love became Bella's anchor during the stormiest seas.Despite the challenges, Bella's heart remains full of hope, and her resilience shines through the darkest moments. She continues to wait for a bowel transplant, a life-changing procedure that could bring new possibilities. Through it all, Kyla remains steadfast, ensuring that Bella's spirit never falters and that she continues to live life to the fullest."Bella's Unbreakable Spirit: A Journey of Courage and Love" is a heartwarming tale of a mother's love and a daughter's unwavering courage in the face of adversity. Join them on their extraordinary journey, where they prove that with love and determination, even the most challenging paths can be navigated with grace and hope. Their story serves as a reminder that the power of love and resilience can conquer all obstacles, and that every day is an opportunity to embrace life's blessings and face its trials head-on.Watch full episode on YouTubeResources Mentioned:Shop Bella's MerchFollow their journey on Instagram, TikTok, YouTube, and FacebookSupport the LYM Podcast:Subscribe to our YouTube channelLeave us a review on Apple Podcasts or SpotifyVisit our website Join our mailing listSend a gift to our host VinceWant to sponsor episodes of LYM? Reach out to us on our websiteSupport the show
Dr. Lauren Sanchez delivers a talk on the complicated and emotional process of SCID and PI patients transitioning from pediatric to adult care. Transcript: https://primaryimmune.org/files/edittranscript-transition-carepdf To view the video of this presentation on YouTube, click here: https://www.youtube.com/watch?v=aKl7tZJiiZc Click here to view a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Sanchez%20Transition%20of%20Care%205-31-23%20FINAL.pdf IDF Transition Guide: https://primaryimmune.org/publication/patients-and-families/immune-deficiency-foundation-guide-young-adults Your support of IDF helps make programs like this possible. To donate, volunteer, or learn more, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
In this podcast, an experienced conference and webinar moderator is joined by two doctors in the field of paediatric infectious diseases: David Greenberg and Maria Hemming-Harlo. In this podcast, our guest experts provide information and their perspectives on the following topics: The disease burden of rotavirus The related morbidity and mortality of rotavirus How rotavirus is transmitted The clinical picture of rotavirus infection The evidence supporting routine vaccination with RotaTeq (Rotavirus Vaccine, Live, Oral, Pentavalent) This podcast was funded by Merck Sharp & Dohme LLC. Below please find the reference list for Vax Voices, Podcast 1: The Global Burden of Rotavirus Disease and Evidence Supporting Routine Vaccination With RotaTeq to ensure listeners can further explore the content discussed. View the product information and indication for RotaTeq here. View the Select Safety Information from MSD below. Select Safety Information RotaTeq should not be administered to infants with a demonstrated history of hypersensitivity to the vaccine or any component of the vaccine. Infants with a history of intussusception or who have congenital malformation of the gastrointestinal tract that could predispose infants to intussusception should not receive RotaTeq. Infants with Severe Combined Immunodeficiency Disease or SCID should not receive RotaTeq. Administration of RotaTeq should be postponed in infants suffering from acute severe febrile illness. The presence of a minor infection is not a contraindication for immunisation. The administration of RotaTeq should be postponed in subjects suffering from acute diarrhoea or vomiting. No safety or efficacy data are available from clinical trials regarding the administration of RotaTeq to infants who are potentially immunocompromised. Cases of gastroenteritis associated with vaccine virus have been reported post marketing in infants with severe combined immunodeficiency. Vaccine virus transmission from vaccine recipient to nonvaccinated contacts has been reported. Caution is advised when considering whether to administer RotaTeq to individuals with immunodeficient contacts. In post-marketing experience, intussusception (including death) and Kawasaki disease have been reported in infants who have received RotaTeq. As a precaution, healthcare professionals should follow-up on any symptoms indicative of intussusception (severe abdominal pain, persistent vomiting, bloody stools, abdominal bloating and/or high fever) since data from observational studies indicate an increased risk of intussusception, mostly within 7 days after rotavirus vaccination. Parents/guardians should be advised to promptly report such symptoms to their healthcare provider. The level of protection provided by RotaTeq is based on the completion of all 3 doses. As with any vaccine, vaccination with RotaTeq may not result in complete protection in all recipients. HQ-ROT-00133 | 02/23 Podcast References: 1.Nelson R. COVID-19 disrupts vaccine delivery. Lancet Infect Dis. 2020;20(5):546. 2.Centers for Disease Control and Prevention (CDC). Epidemiology and Prevention of Vaccine-Preventable Diseases. 14th ed. Chapter 19: Rotavirus. Available at: https://www.cdc.gov/vaccines/pubs/pinkbook/rota.html. Last accessed: 6 March 2023. 3.Dormitzer PR. "Rotaviruses," Mandell GL, et al, eds. Mandell, Douglas, and Bennett's Principles and Practice of Infectious Diseases. 9th ed. Elsevier Saunders; 2019:1983-96. 4.Centers for Disease Control and Prevention (CDC). Rotavirus. Clinical information. 2021. Available at: https://www.cdc.gov/rotavirus/clinical.html. Last accessed: 13 October 2022. 5.Troeger C et al. Rotavirus vaccination and the global burden of rotavirus diarrhea among children younger than 5 years. JAMA Pediatr. 2018;172(10):958-965. Erratum in: JAMA Pediatr. 2022;176(2):208. 6.GBD Diarrhoeal Diseases Collaborators. Estimates of global, regional, and national morbidity, mortality, and aetiologies of diarrhoeal diseases: a systematic analysis for the Global Burden of Disease Study 2015. Lancet Infect Dis. 2017;17(9):909-948. Erratum in: Lancet Infect Dis. 2017 Sep;17(9):897. 7.Van Damme P et al. Rotavirus vaccines: considerations for successful implementation in Europe. Lancet Infect Dis. 2006;6(12):805-12. 8.Paul MO, Erinle EA. Influence of humidity on rotavirus prevalence among Nigerian infants and young children with gastroenteritis. J Clin Microbiol. 1982;15(2):212-5. 9.Finnish Institute for Health and Welfare. Infectious diseases and vaccines: rotavirus vaccine. 2020. Available at: https://thl.fi/en/web/infectious-diseases-and-vaccinations/vaccines-a-to-z/rotavirus-vaccine. Last accessed: 16 September 2022. 10.GBD 2013 Mortality and Causes of Death Collaborators. Global, regional, and national age-sex specific all-cause and cause-specific mortality for 240 causes of death, 1990-2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet. 2015;385(9963):117-71. 11.Franco MA et al. Immunity and correlates of protection for rotavirus vaccines. Vaccine. 2006;24(15):2718-31. 12.Gentsch JR et al. Serotype diversity and reassortment between human and animal rotavirus strains: implications for rotavirus vaccine programs. J Infect Dis. 2005;192(Suppl 1):S146-59. 13.Merck & Co. RotaTeq®. Prescribing information. 2022. Available at: https://www.merck.com/product/usa/pi_circulars/r/rotateq/rotateq_pi.pdf. Last accessed: 4 January 2023. 14.European Medicine Agency (EMA). RotaTeq. Summary of product characteristics. 2022. Available at: https://www.ema.europa.eu/en/documents/product-information/rotateq-epar-product-information_en.pdf. Last accessed: 4 January 2023. 15.Velasquez-Portocarrero DE et al. Head-to-head comparison of the immunogenicity of RotaTeq and Rotarix rotavirus vaccines and factors associated with seroresponse in infants in Bangladesh: a randomised, controlled, open-label, parallel, phase 4 trial. Lancet Infect Dis. 2022;22(11):1606-16. 16.Cortese MM, Parashar UD; Centers for Disease Control and Prevention (CDC). Prevention of rotavirus gastroenteritis among infants and children: recommendations of the Advisory Committee on Immunization Practices (ACIP). MMWR Recomm Rep. 2009;58(RR-2):1-25. 17.Vesikari T et al.; Rotavirus Efficacy and Safety Trial (REST) Study Team. Safety and efficacy of a pentavalent human-bovine (WC3) reassortant rotavirus vaccine. N Engl J Med. 2006;354(1):23-33. 18.Vesikari T et al. Efficacy of a pentavalent rotavirus vaccine in reducing rotavirus-associated health care utilization across three regions (11 countries). Int J Infect Dis. 2007;11(Suppl 2):S29-35. 19.Heyse JF; REST Study Team. Evaluating the safety of a rotavirus vaccine: the REST of the story. Clin Trials. 2008;5(2):131-9. 20.World Health Organization (WHO). Rotavirus vaccines: WHO position paper. Wkly Epidemiol Rec. 2021;96(28):301-20.
jQuery(document).ready(function(){ cab.clickify(); }); Original Podcast with clickable words https://tinyurl.com/2ybc2ewq Contact: irishlingos@gmail.com Colleges in Cork closed "due to technology breach". Coláistí i gCorcaigh dúnta "mar gheall ar shárú teicneolaíochta". Munster University of Technology management staff are due to assess today the extent of the damage caused by the university's information technology system being "breached". Tá foireann bhainistíochta Ollscoil Teicneolaíochta na Mumhan le measúnú a dhéanamh inniu ar mhéid an damáiste a rinneadh de bharr córas teicneolaíochta faisnéise na hollscoile a bheith "sáraithe". In addition to the computer system, the telephone system is also out of order. Chomh maith leis an gcóras ríomhaireachta, tá an córas teileafón as feidhm leis. Around 6 o'clock yesterday evening the "violation" came to light and the university campuses in Cork are closed today, and they will be closed again tomorrow, because of it. Thart ar 6 a chlog tráthnóna inné a tháinig an "sárú" chun solais agus tá campais na hollscoile i gCorcaigh dúnta inniu, agus beidh siad dúnta arís amárach, mar gheall air. There are four centers in Cork, namely the campus in Bishopstown; The National Maritime College of Ireland in Rennskiddigh; Crawford College of Art and Design in Loch; and the Cork School of Music in Templeton. Ceithre ionad i gCorcaigh atá i gceist, mar atá, an campas i mBaile an Easpaig; Coláiste Náisiúnta Mara na hÉireann i Rinn an Scidígh; Coláiste Ealaíne is Deartha Crawford sa Loch; agus Ceol-Scoil Chorcaí i mBaile an Teampaill. The two campuses in Tralee, Co Kerry, do not seem to be suffering. Ní cosúil go bhfuil an dá champas i dTrá Lí, Co Chiarraí, thíos leis. It is not yet clear who is responsible for the denial of service but Gardai in Tochar are investigating the matter. Níl sé soiléir fós an cibirionsaí is siocair leis an éaradh seirbhíse ach tá na Gardaí sa Tóchar ag fiosrú an scéil. Staff and students are asked to keep an eye on their emails for new information. Iarrtar ar an bhfoireann agus na mic léinn súil a choinneáil ar a gcuid ríomhphost le haghaidh eolais úir. RTÉ News and Current Affairs Nuacht agus Cúrsaí Reatha RTÉ
That's Cool News | A weekly breakdown of positive Science & Tech news.
Porsche's synthetic gasoline factory comes online today in Chile | Ars Technica (01:07) A Chilean startup called Highly Innovative Fuels officially opened its first synthetic gasoline production facility. Result of a collaboration between the automaker Porsche, Siemens Energy, Exxon Mobil, Enel Green Power, the Chilean state energy company ENAP, and Empresas Gasco. What is synthetic fuel or synfuel? A feedstock is a raw material that is used as a source of energy or as a starting material for the production of a product. A type of fuel that is made from synthetic hydrocarbons Typically produced from coal, natural gas, or biomass through a process known as the Fischer-Tropsch process. Synthetic fuel is a direct drop-in for pump gasoline Initially, the site will produce around 34,000 gallons (130,000 L) a year, Scaling up to 14.5 million gallons (55 million L) a year by 2024. Plans to increase that tenfold to 145 million gallons (550 million L) a year by 2026. The site, located in Punta Arenas in Southern Chile, will use wind to power the processThe area sees high winds roughly 270 days a year, and a wind turbine can expect to produce up to four times as much energy as one in Europe. Conversion process of the plant:The e-fuel plant will use wind power to electrolyze water into hydrogen and oxygen. The hydrogen is then combined with carbon captured from the air or industrial sources to synthesize methanol. The methanol in turn can then be converted into longer hydrocarbons to be used as fuel. HIF has long-term plans to build out 12 synthetic fuel plants worldwide, including locations in the US and Australia, with a goal of each site capturing 2 million metric tons of CO2 per year.Could be an incentive for CO2 capture! It is NOT CHEAPAt current prices, it works out to around $8 per gallon ($2/L), although that obviously doesn't include any taxes or duties NASA Discovers Pair of Super-Earths With 1,000-Mile-Deep Oceans | SciTechDaily (08:24) Astronomers have uncovered a pair of planets that are water worlds unlike any planet found in our solar system.Slightly larger than Earth, they don't have the density of rock, but they are denser than gas giants in our solar system What are they made of? The best answer is that these exoplanets have global oceans at least 500 times deeper than the average depth of Earth's oceans, which simply are a wet veneer on a rocky ball. They orbit the red dwarf star Kepler-138, located 218 light-years away in the constellation Lyra.Called Kepler-138 c and Kepler-138 d Planets were initially found in 2014 with NASA's Kepler Space Observatory. But with follow-up observations with the Spitzer and Hubble space telescopes they found that the planets must be composed largely of water. The discovery was made by a team of researchers at the University of Montreal lead by Caroline Piaulet.By comparing the sizes and masses of the planets to models, the astronomers concluded that a significant fraction of their volume should be made of materials that are lighter than rock but heavier than hydrogen or helium. Most common being water. The closest size comparison, say researchers, would be some of the icy moons in the outer solar system (i.e. Europa, Enceladus) that are also largely composed of water surrounding a rocky core. But don't expect the water to be the same as the water you see here. According to Piaulet:“The temperature in Kepler-138 d's atmosphere is likely above the boiling point of water, and we expect a thick dense atmosphere made of steam on this planet. Only under that steam atmosphere there could potentially be liquid water at high pressure, or even water in another phase that occurs at high pressures, called a supercritical fluid.” A supercritical fluid is a substance that is in a state between a gas and a liquid and exhibits unique properties that are intermediate between the two phases. (Not a pressure to be solid) Gene therapy cures kids with rare “bubble-boy” disease in new trial | New Atlas (12:18) A rare genetic disease, called Severe combined immunodeficiency (SCID), renders children without a functioning immune system from birth has been effectively cured by an experimental gene therapy. SCID is a collection of genetic diseases that result in impaired immune functions. Informally known as the "bubble-boy" disease The study is reporting on the first 10 children treated with the therapy, all of whom are now healthy and living normal lives. The two most common forms of SCID – X-SCID and ADA-SCID – have been successfully treated with an experimental gene therapy.The patient's bone marrow stem cells are harvested, modified with a healthy copy of the targeted gene, and then infused back into their bodies. This form of gene therapy uses a modified virus to deliver its healthy gene payload. Sometimes cancerous side effects. Because those viruses can only enter a cell's nuclei when it's dividing they can potentially generate adverse side effects. Many researchers have shifted to using modified lentiviruses as the optimal viral vector for gene therapies.Enter the nuclei of non-dividing cells meaning they should be safer and more effective. In 2021, a more long-term study tracking 50 children with ADA-SCID treated with lentiviral gene therapy found every subject was alive and healthy three years later. The 10 children in this latest study were treated for ART-SCID, which is an extremely rare version of SCID and difficult to treat. Over two years after the initial treatment all 10 children are reported as healthy and living normal lives. Jennifer Puck, co-lead investigator on the study, discusses the results:“All of the results are better than those previously seen with Artemis-SCID patients who received donor bone marrow transplants … Having patients in the trial achieve full T-cell immunity is outstanding. B-cell recovery takes longer, but so far it looks as if the patients also have a far better chance for B-cell reconstitution than they would with a regular bone marrow transplant. Successfully using less chemotherapy is also a big win, minimizing the harmful side effects of full dose busulfan in small infants.” Larger studies are needed (as always), but the results are extraordinarily promising, pointing to a future where this genetic disease can be cured soon after birth. Proof-of-concept drone flight delivers transplant lung to patient in Toronto | TechXplore (17:37) A team of researchers have demonstrated the feasibility of using drones to carry human organs for transplantation to nearby locales. A drone carried a human lung donated by a deceased patient at one hospital in downtown Toronto, Canada, to another patient needing a new lung waiting in another hospital, also in downtown Toronto. This feasibility study was meant to test the use of drones for carrying donated organs on a regular basis.Drone used was the Chinese-made M600 Pro Added new electronics designed specifically for strong connectivity—the drone is steered on its path by a human pilot. Added a parachute, lights, several cameras, GPS trackers and a recovery system. Finally, they removed the landing gear and replaced it with a container box specifically designed to keep organs cool during transport. They had the drone carry objects from point to point, testing all of its features. After 400 such test flights, they deemed their drone ready The proof-of-concept flight:Took off from Toronto Western Hospital with the drone carrying a donated lung Flew to Toronto General Hospital, just two kilometers away The lung was delivered and safely implanted into the waiting patient. The researchers suggest their approach can be used for short-distance transfers in densely populated areas, such as across a city, greatly reducing delivery time.Ground vehicles can take a lot of time due to congestion and unforeseen tie-ups. Blood test detects 'toxic' protein years before Alzheimer's symptoms emerge | ScienceDaily (22:55) Seeds of Alzheimer's are planted years -- even decades – before the cognitive impairments surface that make a diagnosis possible. Amyloid beta proteins that misfold and clump together, forming small aggregates called oligomers. Those oligomers through a process scientists still do not understand become “toxic,” which then are thought of to cause Alzheimer's. University of Washington researchers have developed a laboratory test that can measure levels of amyloid beta oligomers in blood samples. Detected in the blood of patients with Alzheimer's disease But did not detect them in most members of a control group who showed no signs of cognitive impairment Their test, known by the acronym SOBA, did detect oligomers in the blood of 11 individuals from the control group.10 of these individuals had follow-up examinations where all were diagnosed years later with mild cognitive impairment or brain pathology consistent with Alzheimer's disease. Senior author professor Valerie Daggett stated:“What clinicians and researchers have wanted is a reliable diagnostic test for Alzheimer's disease -- and not just an assay that confirms a diagnosis of Alzheimer's, but one that can also detect signs of the disease before cognitive impairment happens. That's important for individuals' health and for all the research into how toxic oligomers of amyloid beta go on and cause the damage that they do … What we show here is that SOBA may be the basis of such a test." In the study, the team also showed that SOBA easily could be modified to detect toxic oligomers of another type of protein associated with Parkinson's disease and Lewy body dementia. Dagget stating:"We are finding that many human diseases are associated with the accumulation of toxic oligomers that form these alpha sheet structures … Not just Alzheimer's, but also Parkinson's, type 2 diabetes and more. SOBA is picking up that unique alpha sheet structure, so we hope that this method can help in diagnosing and studying many other 'protein misfolding' diseases."
$5 Q-BANK: https://www.patreon.com/highyieldfamilymedicine Intro 0:30, Selective IgA deficiency 1:30, Bruton's agammaglobulinemia 3:27, Transient hypogammaglobulinemia 4:47, Hyper IgM syndrome 5:45, Common variable immunodeficiency (CVID) 6:52, Severe combined immunodeficiency (SCID) 8:17, DiGeorge syndrome 10:58, Ataxia telangiectasia 13:21, Wiskott-Aldrich syndrome 14:54, Hyper IgE syndrome 16:02, Leukocyte adhesion deficiency 18:04, Chediak-Higashi syndrome 19:11, Chronic granulomatous disease 20:09, Complement deficiencies 21:56, Leukemia and lymphoma 23:40, Secondary immunodeficiencies 25:25, Practice questions 27:22
Videos : Niall Ferguson – Woke Totalitarianism (0:19 to 18:14) Heather Mac Donald On How The Delusion of Diversity Destroys Our Common Humanity (11:14) Elon Musk: “Klaus Schwab Is LYING!!!” (9:45) Lycopene, lutein supplements show skin protection from within against UV radiation Leibniz Research Institute for Environmental Medicine (Germany), November 10, 2022 The study's findings, published in the British Journal of Dermatology , indicated that oral supplementation with the carotenoids changed the expression of genes that are indicators of oxidative stress, photo-dermatoses and photo-aging. “To the best of our knowledge we show here for the 1st time that (i) tomato nutrient complex as well as lutein do not only protect healthy human skin against UVB/A, but also against long wave UVA1 radiation, and (ii) that oral photo-protection of healthy human skin can be demonstrated at the level of HO-1, ICAM-1 and MMP-1 gene expression,” wrote researchers from IUF – Leibniz Research Institute for Environmental Medicine in Dusseldorf. Heme oxygenase-1 (HO-1), intercellular adhesion molecule-1 (ICAM-1) and matrix metalloproteinase-1 (MMP-1) are reported to be UVA1/UVB radiation-inducible genes. “On top of that, as part of the photo-aging process we have evidence of the effect of our ingredients on the levels of expression of genes involved in collagen degradation, suggesting a link not only to skin health but also to skin appearance. This study suggests an effect of natural antioxidants on overall skin wellness, which is relevant for men and women in all age groups.” The new study included 65 healthy volunteers aged between 18 and 60. The participants were randomly assigned to randomly consume 20 mg per day of the tomato nutrient complex or placebo for 12 weeks, or 20 mg per day of lutein or placebo for 12 weeks. A two-week washout period separated the placebo and active intervention periods. At the beginning and at the end of each phase the skin was irradiated.Results of the placebo-controlled, double blinded, randomized cross-over study indicated that the tomato nutrient complex (TNC) totally inhibited the upregulation of HO-1, ICAM-1 and MMP1 mRNA by both UVA1 and UVA/B. On the other hand, lutein only completely inhibited gene expression if taken during the first 12 weeks (ie. prior to placebo), while a significantly smaller effect was observed if it was taken during the second 12 week phase (ie. after placebo), compared to TNC. (NEXT) Diallyl trisulfide in garlic induces apoptosis in primary effusion lymphoma Kyoto Pharmaceutical University (Japan), November 7, 2022 Reports from Kyoto Pharmaceutical University stated, “The allyl sulfides, including diallyl sulfide (DAS), diallyl disulfide (DAD), and diallyl trisulfide (DAT), contained in garlic and members of the Allium family, have a variety of pharmacological activities. Therefore, allyl sulfides have been evaluated as potential novel chemotherapeutic agents.” Our news editors obtained a quote from the research, “Here, we found that DAT inhibited nuclear factor-kB (NF-kB) signaling and induced apoptosis in primary effusion lymphoma (PEL), a subtype of non-Hodgkin's B-cell lymphoma caused by Kaposi's sarcoma-associated herpesvirus (KSHV). We examined the cytotoxic effects of DAS, DAD and DAT on PEL cells. DAT significantly reduced the viability of PEL cells compared with uninfected B-lymphoma cells, and induced the apoptosis of PEL cells by activating caspase-9. DAT induced stabilization of IkBa, and suppressed NF-kB transcriptional activity in PEL cells. We examined the mechanism underlying DAT-mediated IkBa stabilization. The results indicated that DAT stabilized IkBa by inhibiting the phosphorylation of IkBa by the IkB kinase (IKK) complex. Furthermore, DAT induced proteasomal degradation of TRAF6, and DAT suppressed IKKb-phosphorylation through downregulation of TRAF6. It is known that activation of NF-kB is essential for survival of PEL cells. In fact, the NF-kB inhibitor BAY11-7082 induced apoptosis in PEL cells. In addition, DAT suppressed the production of progeny virus from PEL cells. The administration of DAT suppressed the development of PEL cells and ascites in SCID mice xenografted with PEL cells.” According to the news editors, the research concluded: “These findings provide evidence that DAT has antitumor activity against PEL cells in-vitro and in-vivo, suggesting it to be a novel therapeutic agent for the treatment of PEL.” (NEXT) PTSD May Speed Up Cellular Aging Boston University, November 13, 2022 From birth to death, a lot may change, but our DNA—the long, double-helix molecule that contains all of a person's genetic code—stays the same. The instructions for reading that code can shift, however, as the chemical tags on and around a DNA sequence change throughout our lives, depending on our age, environment, and behavior. This outside influence on how our genes are read and expressed by cells is called epigenetics—and researchers studying it have discovered clues that may show why some veterans live longer than others. In a new study of military veterans published in Translational Psychiatry, researchers report findings that suggest former service personnel with PTSD are at greater risk of early death. “Our study found that PTSD and comorbid conditions, like substance misuse, are associated with a cellular marker of early death found in DNA methylation patterns,” says Erika Wolf, a professor of psychiatry at the Boston University School of Medicine and senior author of the study. The study included two samples of veterans that had representative levels of trauma and other psychiatric conditions, like substance use and personality disorders. One group included 434 veterans in their early 30s, who had served in post-9/11 conflicts; the other group included 647 middle-age veterans and their trauma-exposed spouses. Both groups were assessed for a range of psychological conditions, and had blood drawn to obtain genetic information and to test for levels of a variety of inflammatory molecules. The results indicate PTSD symptoms were a factor in faster cellular aging—.36 of a year faster. So, for every year that the cells of someone without PTSD age, the cells of someone with more severe PTSD symptoms age a year and a third. (NEXT) Higher sense of purpose in life may be linked to lower mortality risk Boston University, November 14, 2022 Growing research indicates that one's purpose—i.e., the extent to which someone perceives a sense of direction and goals in their life—may be linked to health-protective benefits such as better physical functioning and lower risks of cardiovascular disease or cognitive decline. Now, a new study led by a Boston University School of Public Health (BUSPH) researcher found that people with higher levels of purpose may have a lower risk of death from any cause, and that this association is applicable across race/ethnicity and gender. Published in the journal Preventive Medicine, the study results did suggest that this association is slightly stronger among women than it is among men, but there was no significant difference by race/ethnicity. “In another study I led, we found that the effect of purpose on lowering all-cause mortality may differ by socioeconomic status. In this study, we extended the prior evidence and found that the beneficial effect of purpose persisted regardless of gender and race/ethnicity.” For the study, the team assessed self-reported sense of purpose among more than 13,000 people, based on the “purpose in life” of the Ryff Psychological Well-being Scales, a widely used tool that measures different aspects of well-being and happiness. The researchers also examined mortality risk over an eight-year period beginning between 2006-2008. The results showed that people with the highest sense of purpose indicated the lowest risk of death (15.2 percent mortality risk), compared to people with the lowest sense of purpose (36.5 percent mortality risk). The team also gathered data on additional factors that can influence health, such socioeconomic status, other demographic characteristics, baseline physical health, and depression, and found that an increase in these factors was also associated with increases in a higher sense of purpose. (NEXT) Hibiscus compound shows anti-Alzheimer disease activity Pohang University of Science and Technology, November 16 2022. A report published in Alzheimer's Research & Therapy revealed that gossypetin, a flavonoid occurring in the calyx of the hibiscus flower, activates a process that reduces brain accumulation of amyloid beta, a protein that clumps to form toxic brain plaques in people with Alzheimer disease. Gossypetin has been reported to have antioxidant, antiatherosclerotic and anticancer effects. Earlier research had suggested a benefit for gossypetin, which is structurally similar to quercetin, against the aggregation of amyloid beta and tau proteins that occurs in Alzheimer disease. However, gossypetin's action in animal models of the disease had not been evaluated. Researchers at Pohang University of Science and Technology administered gossypetin or a control substance to mice that were bred to develop a condition similar to that of Alzheimer disease in humans. After 13 weeks of daily treatment, mice that received the flavonoid had less amyloid beta in the brain's hippocampus (an area involved in memory and learning) and cortex in comparison with the control mice. Gossypetin-treated animals also demonstrated better spatial learning and memory than untreated mice. Rather than affecting the production of amyloid beta, the research team found that gossypetin helped clear it by enhancing the scavenging ability of the brain's immune cells, which are known as microglia. Microglia normally consume amyloid beta but can become exhausted by continual exposure, which leads to a chronic damaging inflammatory reaction. (NEXT) Over a billion young people are potentially at risk of hearing loss from headphones, earbuds, loud music venues Mayo Clinic, November 15, 2022 More than 1 billion teens and young people are potentially at risk of hearing loss because of their use of headphones and earbuds and attendance at loud music venues, concludes a pooled data analysis of the available evidence, published in the open access journal BMJ Global Health. The World Health Organization (WHO) estimates that over 430 million people worldwide currently have disabling hearing loss. Young people are particularly vulnerable because of their use of personal listening devices (PLDs), such as smartphones, headphones and earbuds, and attendance at loud music venues, amid poor regulatory enforcement. Previously published research suggests that PLD users often choose volumes as high as 105 dB while average sound levels at entertainment venues range from 104 to 112 dB, exceeding permissible levels (80 dB for adults; 75 dB for children) even if for very short periods of time. A group of 33 studies, corresponding to data from 35 records and 19,046 participants, was included; 17 records focused on PLD use and 18 focused on loud entertainment venues. The pooled data analysis indicates that the prevalence of unsafe listening practices from PLD use and attendance at loud entertainment venues is common worldwide—24% and 48%, respectively, among teens and young people. Based on these figures, the researchers estimate that the global number of teens and young adults who could potentially be at risk of hearing loss as a result ranges from 0.67 to 1.35 billion.
Alissa Creamer (IDF's Director of Community Services) and Melissa Raspa (RTI's Senior Research Public Health Analyst) discuss the successes of the 4-year SCID Compass program. SCID Compass Website: https://scidcompass.org/ RTI International: https://www.rti.org/ PI and Travel: https://primaryimmune.org/travelling-with-pi The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
A new research paper was published in Oncotarget's Volume 13 on October 19, 2022, entitled, “Therapeutic efficacy of the humanized JAA-F11 anti-Thomsen-Friedenreich antibody constructs H2aL2a and H3L3 in human breast and lung cancer xenograft models.” The Thomsen-Friedenreich antigen (TF-Ag-α) is found on ~85% of human carcinomas but is cryptic on normal tissue. The humanized, highly specific hJAA-F11-H2aL2a and -H3L3 antibodies target TF-Ag-α without binding to TF-Ag-beta (found on surface glycolipids of some normal cells). “The relative affinity of H3L3 is 17 times that of H2aL2a, which would seem to favor superior efficacy, however, increased affinity can result in less tumor penetration.” In a new study, researchers Diala Ghazal, Fatma Zalzala, John C. Fisk, Swetha Tati, Loukia G. Karacosta, Susan Morey, James R. Olson, Sally Quataert, Grace K. Dy, and Kate Rittenhouse-Olson from For-Robin, Inc, University at Buffalo, University of Rochester, and Roswell Park Comprehensive Cancer Center Buffalo aimed to assess the potential therapeutic efficacy of these antibodies by treating four human cancer- mouse xenograft models with H2aL2a and H3L3. The tumor xenograft models used were human non-small cell lung cancer, H520, and small cell lung cancer, HTB171 in nude mice and human triple negative breast cancer, MDA-MB-231 and HCC1806 in SCID mice. H2aL2a significantly decreased tumor growth in both breast and both lung cancer models. H2aL2a showed statistically equal or better efficacy than H3L3 and has superior production capabilities. These results suggest that H2aL2a may be superior as a naked antibody, as an antibody drug conjugate or as a radiolabeled antibody, however the higher affinity of H3L3 may lead to better efficacy in bi-specific therapies in which the binding is decreased due to the presence of only one TF-Ag-α binding site. “In conclusion, both H2aL2a and H3L3 humanized antibodies to TF-Ag-α show efficacy in in vivo xenograft models of human tumors in SCID and nude mice and thus hold promise as therapeutics for breast and lung cancer. H2aL2a significantly decreased tumor growth rate in both breast cancer and both lung cancer models tested. H2aL2a is equal to or better than H3L3 in four of the four models and H2aL2a cell lines have far superior antibody production capabilities under the conditions tested.” DOI: https://doi.org/10.18632/oncotarget.28282 Correspondence to: Kate Rittenhouse-Olson - krolson@buffalo.edu Keywords: hJAA-F11, TF-Ag, Thomsen-Friedenreich antigen, tumor immunotherapy, translational oncology About Oncotarget: Oncotarget (a primarily oncology-focused, peer-reviewed, open access journal) aims to maximize research impact through insightful peer-review; eliminate borders between specialties by linking different fields of oncology, cancer research and biomedical sciences; and foster application of basic and clinical science. To learn more about Oncotarget, visit Oncotarget.com and connect with us on social media: Twitter - https://twitter.com/Oncotarget Facebook - https://www.facebook.com/Oncotarget YouTube – www.youtube.com/c/OncotargetYouTube Instagram - https://www.instagram.com/oncotargetjrnl/ LinkedIn - https://www.linkedin.com/company/oncotarget/ Pinterest - https://www.pinterest.com/oncotarget/ LabTube - https://www.labtube.tv/channel/MTY5OA SoundCloud - https://soundcloud.com/oncotarget For media inquiries, please contact: media@impactjournals.com. Oncotarget Journal Office 6666 East Quaker Str., Suite 1A Orchard Park, NY 14127 Phone: 1-800-922-0957 (option 2)
This week we chat with Kyla - mom to the incredible Bella. Bella was born with complex medical needs including SCID (severe combined immunodeficiency), Hirschsprung's disease, and dwarfism. Together, they are on a mission to show the world what it means to be Bella Brave. To follow Bellas story, follow them on IG and Tiktok @kylact www.patreon.com/ididnotsignupforthis www.ididnotsignupforthis.ca
Meghan Garriott is a Physical Therapy Assistant, photographer, and mom of 3 in rural central Illinois. At nine days old, Meghan's oldest son was diagnosed with a rare genetic disorder called severe combined immunodeficiency (SCID), meaning he was born without an immune system. Meghan donated her bone marrow and saved his life. In order to protect a compromised immune system, their family turned to nature and began spending a lot of time outdoors, which has been a safe space for the whole family to grow, learn, and thrive. She chats with us about adventuring outdoors with a medically-complex child.RWMC website: www.runwildmychild.comRWMC Instagram: @runwild.mychildMeghan's Instagram: @meghangarriottTips for Getting Outside with Medically-Complex KidsBe The MatchRecommendations:Printable State Parks Posters
PJ talks to Fiona about her baby Luna in hospital in the UK with SCID. We find out more about the disease and the treatment the little mite is getting.Support Luna: https://www.gofundme.com/f/support-little-lunas-scid-journey Our GDPR privacy policy was updated on August 8, 2022. Visit acast.com/privacy for more information.
Paola shares the shocking diagnosis her son received as a newborn of ADA-SCID (Severe Combined Immunodeficiency.) This powerful story a he shares how she navigated hospital life during the beginning of the pandemic and her journey with postpartum depression. She shares words of wisdom on how to deal with the feelings that come when your child gets a life altering diagnosis. [5:22] Paola describes the grief she experienced with Jakob's diagnosis [7:10] She describes the shock and acceptance of the news that Jakob has ADA-SCID [9:12] Postpartum depression struggles during isolation [11:10] Sharing the importance of opening up about your struggles [13:44] Being a first time Mom and medical mom [15:03] Paola describes how she fights the good fight [17:44] Her cervical cancer diagnosis after Jakob's diagnosis [19:29] Paola's campaign to fight for Jakob's treatment [20:21]She describes how her cancer diagnosis was her moment to pause [26:50] Coming up with a plan and leaning on community helped Paola cope with the diagnosis [30:12] She shares how Child Life specialists have helped reduced the trauma Jakob has had to endure [31:28] Jakob has taught Paola to be brave and to have courage [32:20] Paola has created an environment that helps Jakob have some normal day to day activities despite being isolation [33:45] She shares how her motherhood journey was so different than what she anticipated, she feels fierce and does not take no for an answer In My Magical Bubble Book Connect with Paola: Instagram Facebook Website Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Parents, download our free parent starter kit. When you download our starter kit, you'll learn how to: Give medicine to your child without it becoming a wrestling match Prepare your child (and yourself) for a shot so they can feel less anxious Create and use a coping plan for any medical appointment or procedure The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing. Child life specialists,get affordable PDUs on-demand here. Shop for your CLOC gear here. Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.
Dr. Khiani is 1 of 5 siblings & is the son of Jaikrishin & Veenu Khiani. Kamal specializes in Diagnostic Radiology with Subspecialization in Musculoskeletal Radiology. He is a unique individual with degrees in BOTH engineering & medicine, graduating Summa Cum Laude with Masters in Electrical Engineering from the J.B. Speed School of Engineering in 1997 & the UofL School of Medicine in 2002. Before those 2 massive academic achievements, in 1995, he graduated Magna Cum Laude with a B.S. degree in Electrical Engineering. He then completed his pre-med training @ the UofL-affiliated hospitals from 2003-04, & his Radiology Residency @ the Geisinger Medical Center in Danville, PA., from 2004-08 & his Musculoskeletal Radiology fellowship @ the Yale University School of Medicine from 2008-09. In addition, he graduated valedictorian (that's 1st in class) from his 1990 Fern Creek High School graduating class, & if all those educational milestones were not enough to keep him busy, he enjoys Ballroom Dancing, Golf, Basketball, movies, board games & spending time with his beautiful wife Jamie, & his 3 beautiful daughters Anjali, Raina, & Ellie as well as his son Lukis. Kamal was instrumental in finding a solution to a rare disease called severe combined immunodeficiency (SCID). For short- a variation of the so-called “Bubble Boy Disease” that made Raina wildly susceptible to fungal, bacterial & viral infections. As a result, she needed a bone marrow transplant, which was apt to kill her.
Welcome to this episode of Physician's Weekly podcast. I am your host, Dr. Rachel Giles, from Medicom Medical Publishers in collaboration with Physicians Weekly. Today we have 2 very interesting and timely interviews to share with you. Later in this podcast, Physician's Weekly's Senior Editor Julia Ernst interviews Dr. Karla O'Dell, from the University of Southern California, about tracheostomy procedures, in particular how you can do open bedside tracheostomies at a low cost without extra risks in safety outcomes. This is of course particularly relevant for this COVID-19 pandemic, and she also reflects on what she thinks those long-term implications will be.But first, we speak with Professor Frank Staal, from the Dept of Immunology at the Leiden University Medical Center, the Netherlands, who was in the news this week because he co-led a team who treated the first baby with severe congenital immune deficiency (SCID) with gene therapy in the Netherlands, and the first time gene therapy has been used to treat this particular form of SCID worldwide. Have you ever heard of the 1976 movie “The Boy in the Plastic Bubble”? That was based on the story of David Vetter, who was born with SCID and lived in a plastic sterile bubble because he had essentially no immune system. New gene therapy techniques are offering alternatives to bone marrow transplants. The treatment in the news this week was effective and the baby is well with a competent immune system. Enjoy listening!Further readingTang L, West J, Lee E, Kharidia K, Hasday S, Chambers T, Kokot N, Swanson M, O'Dell K. Open Bedside Tracheostomy: Safe and Cost Saving but Underutilized Nationally. Otolaryngol Head Neck Surg. 2022 Apr 5:1945998221091905. doi: 10.1177/01945998221091905. Epub ahead of print. PMID: 35380905.Zheng M, Arora N, Chambers T, O'Dell K, Johns MM. Comparison of Treatment for Recurrent Respiratory Papillomatosis at a Public County Versus Private Academic Hospital. J Voice. 2022 Feb 20:S0892-1997(22)00018-2. doi: 10.1016/j.jvoice.2022.01.019. Epub ahead of print. PMID: 35197218.Klaver-Flores S, Zittersteijn HA, Canté-Barrett K, Lankester A, Hoeben RC, Gonçalves MAFV, Pike-Overzet K, Staal FJT. Genomic Engineering in Human Hematopoietic Stem Cells: Hype or Hope? Front Genome Ed. 2021 Jan 22;2:615619. doi: 10.3389/fgeed.2020.615619. PMID: 34713237; PMCID: PMC8525357.
A note from Bella: What's up friends! Let's get some good vibes and dance! So I'm Bella and I am 8 years old. I love fashion, art, drawing, camping and I want to be a fashion designer when I grow up. You may know me from TikTok where I have almost 5 million followers on an account my mom runs of course. We like to spread joy there and inspire people to be brave through hard times. I have been through hard times. Over 800 days to be in hospital to be exact. I was born with 3 rare conditions too; SCID, CHH & Hirschsprung's disease. My mom tells me I've moved many mountains through the 24 surgeries I've been through so far. Right now I am listed and waiting for a bowel transplant. I am really excited to one day get my bowel transplant so I can do more normal kids stuff without so many medical restrictions. But most of all I hope I can inspire you to be brave. ~ Bella Connect With Bella: IG: https://www.instagram.com/kylact/ TikTok: https://www.tiktok.com/t/ZTdnKtAjM/ Website: https://bella-brave.com/ Connect With Sarah: IG: https://www.instagram.com/sarahmalouf__/ Website: www.sarahmalouf.com
In this week's episode, we'll discuss the efficacy of canakinumab in children and young adults with sickle cell anemia, learn more about the use of donor-derived multiple leukemia antigen specific T-cell therapy to prevent relapse in post-transplant patients with ALL, and discuss the defects in nasopharyngeal mucosal immunity in patients with severe combined immunodeficiency after hematopoietic stem cell transplantation.
Listen as Barb Ballard shares her long history of advocacy and innovative efforts in newborn screening. Barb is currently the Director of SCID Angels for Life Foundation. Her involvement with the non-profit sector began after her son, Ray, born in 1994, was diagnosed at 10 ½ months old with X-Linked Severe Combined Immune Deficiency, commonly known as the Bubble Boy Disease. Barb served on the Board of Trustees for The Immune Deficiency Foundation for 18 years, where she advocated for the interests of parents, families and individuals living with immune deficiency at numerous state, and federal committees, while developing the SCID Initiative Program. While her son was hospitalized as a baby at Duke University, Barb developed the first list-serv for families of children diagnosed with SCID. Be inspired by Barb's story of perseverance, determination, and dedication in supporting families facing genetic disease. Interview Questions with Barb Ballard: 1. What is the mission of your organization (perhaps, here you can discuss your grant and scholarship program, community engagement activities, and resources on clinical trials)? 2. Barb had a child with SCID who also touched many lives and his story directly and indirectly led to changes in the way newborns are screened, diagnosed, and treated for immune deficiencies. Can you tell our listeners about his life and your hopes for his legacy? 3. Before Ray was diagnosed with SCID were you aware of newborn screening? What do you think prospective parents should know about newborn screening – not only for SCID but other conditions? 4. Because SCID is a spectrum of different genetic variations (or changes, we used to call them mutations) and needs of patients with SCID vary drastically, how do you engage clinical research partners to understand the needs and concerns of the patient population? 5. What are some of the current efforts of SCID Angels for Life organization in disseminating information on new clinical research? 6. What role does your Facebook or other social channels help to support families whose newborn screens positive for SCID? Are there things that national groups like NIH, CDC and HRSA could be doing to support new families? 7. Your organization also currently manages three scholarship programs to support families: Family Scholarship, Travel Scholarship, and Education Scholarship. How could our listeners learn more about these programs? (perhaps you talk about the application process, deadline, qualifications) 8. You have hosted several Town Halls and other informational webinars on new information or clinical trials where the patients and their families are looking to have their questions answered directly. What are some of the common frequently asked questions? 9. What does NBS research mean to you? To learn more about SCID Angels for Life, visit http://www.scidangelsforlife.com If you have a story on how rare disease research has impacted your life and family, please contact NBSTRN to share your story on our podcast. Visit www.nbstrn.org
jQuery(document).ready(function(){ cab.clickify(); }); Original Podcast with clickable words https://tinyurl.com/y7ns9go3 Contact: irishlingos@gmail.com Tánaiste self-isolated with positive antigen test. An Tánaiste ag féin-aonrú agus tástáil dhearfach antaigine aige. The Tánaiste has canceled some of his previous events and is self-isolating and has tested positive for antigen. Chuir an Tánaiste roinnt ócáidí a bhí aige ar ceal agus tá sé ag féin-aonrú agus tástáil dhearfach antaigine faighte aige. The Tánaiste was to attend a number of public events in Ballincollig and Ringaskiddy in County Cork today as well as attending a number of private parties. Bhí an Tánaiste le freastal ar roinnt ócáidí poiblí i mBaile an Chollaigh agus i Rinn an Scidígh i gContae Chorcaí inniu chomh maith le freastal ar roinnt chóisirí príobháideacha. It was confirmed this morning that the Tánaiste would not be attending these events. Deimhníodh ar maidin nach mbeadh an Tánaiste ag freastal ar na hócáidí sin. A spokesperson for the Tánaiste said that the Tánaiste is self-isolated because of a positive antigen test he has received. Dúirt úrlabhraí ar son an Tánaiste go bhfuil an Tánaiste ag féin-aonrú mar gheall ar thástáil dhearfach antaigine atá faighte aige. He was said to have tested negative in Brussels yesterday. Dúradh gur thástáil sé diúltach sa Bhruiséil inné. It has been said that it has some notorious signs that it is not too bad but other than that it is doing well with the intention of attending any event that it can virtually online. Dúradh go bhfuil mionchomharthaí sóirt nach bhfuil ródhona air ach taobh amuigh de sin tá sé ag déanamh go maith agus é ar intinn aige freastal ar aon ócáid gur féidir leis ar líne go fíorúil.
I was so grateful to have the opportunity to sit down with TikTok megastar Kyla Thomson to discuss her life as a medical mom to Bella. Bella and her family have been inspiring the world for years on social media, creating and promoting the hashtag #BellaBrave, reminding us all that we can do hard things while finding a silver lining amidst even the most difficult challenges. A word from Kyla: I am Kyla Thomson and I am a medical mom to Bella. Before Bella was born I was a teacher. My husband and I have lived on our acreage near Swift Current, Saskatchewan, Canada (where I grew up)since 2012. Currently Bella is 8y old and in grade 3. Our son Waylon (non - medical kiddo) is 3 years old and the sweetest little brother to Bella. The first 2 years of Bella's life we spent in hospital. Those years put her through many bowel surgeries for LSHD & CVCs, a bone marrow transplant for having been unknowingly born with SCID and many hospital transfers. Currently 23 surgeries, Bowel failure & loss of vascular access has landed Bella on the Bowel Transplant waiting list since July of 2020. We are currently managing her conditions through the primary care of Alberta Children's Hospital & Toronto SickKids hospital while I remain a full time medical mom in our home. My daughter Bella has not only made me a medical mom but has shown me what it means to be brave. We aim to inspire the world & show that you can still find joy through the hardest of times. My husband and son are the rocks that support us through it all. Each day from birth my baby girl has had to fight rare disease and she continues to do so with such bravery and strength. She has taught me so much as her momma and I couldn't be more proud of how she handles this medical life. Connect with Kyla(and Bella!): Website link: https://bella-brave.com/ IG: https://www.instagram.com/kylact/ Facebook: https://www.facebook.com/BellaBravesMustardSeed YouTube: https://youtube.com/c/kylact Tiktok: https://vm.tiktok.com/ZMLLSFAqF/ Connect with Sarah: IG: https://www.instagram.com/sarahmalouf__/
I was so grateful to have the opportunity to sit down with TikTok megastar Kyla Thomson to discuss her life as a medical mom to Bella. Bella and her family have been inspiring the world for years on social media, creating and promoting the hashtag #BellaBrave, reminding us all that we can do hard things while finding a silver lining amidst even the most difficult challenges. A word from Kyla: I am Kyla Thomson and I am a medical mom to Bella. Before Bella was born I was a teacher. My husband and I have lived on our acreage near Swift Current, Saskatchewan, Canada (where I grew up)since 2012. Currently Bella is 8y old and in grade 3. Our son Waylon (non - medical kiddo) is 3 years old and the sweetest little brother to Bella. The first 2 years of Bella's life we spent in hospital. Those years put her through many bowel surgeries for LSHD & CVCs, a bone marrow transplant for having been unknowingly born with SCID and many hospital transfers. Currently 23 surgeries, Bowel failure & loss of vascular access has landed Bella on the Bowel Transplant waiting list since July of 2020. We are currently managing her conditions through the primary care of Alberta Children's Hospital & Toronto SickKids hospital while I remain a full time medical mom in our home. My daughter Bella has not only made me a medical mom but has shown me what it means to be brave. We aim to inspire the world & show that you can still find joy through the hardest of times. My husband and son are the rocks that support us through it all. Each day from birth my baby girl has had to fight rare disease and she continues to do so with such bravery and strength. She has taught me so much as her momma and I couldn't be more proud of how she handles this medical life. Connect with Kyla(and Bella!): Website link: https://bella-brave.com/ IG: https://www.instagram.com/kylact/ Facebook: https://www.facebook.com/BellaBravesMustardSeed YouTube: https://youtube.com/c/kylact Tiktok: https://vm.tiktok.com/ZMLLSFAqF/ Connect with Sarah: IG: https://www.instagram.com/sarahmalouf__/
The novel centers on 18-year-old Madeline Whittier, who is being treated for severe combined immunodeficiency (SCID), also known as "bubble baby disease". Due to this, Madeline is kept inside her house in Los Angeles, where she lives with her mother, a doctor. The story follows 18-year-old Madeline Whittier a half Japanese, half African-American 18-year-old who is being treated by her doctor mother for severe combined immunodeficiency (SCID), and therefore is not allowed to leave her house or interact with anything that has not been "sanitized". Her world consists of her mother Pauline, her nurse Carla, and the books she finds comfort in; with her father and brother having died a long time ago in a car accident. Maddy's life changes when a family moves in next door. She watches them from the window and learns that the family includes a father, mother, daughter named Kara, and a son named Olly. Olly befriends Maddy, and the two begin to message each other online. Meanwhile, Olly's father is abusive and Kara has a smoking problem.
Laura Hall is board certified in Obstetrics and Gynecology, Fetal Echocardiograms, Abdomen and Vascular ultrasound. For the past 6 years, she has worked in high risk perinatal sonography. Laura is the loving wife of a software engineer and supportive mother of two young children, a four year old boy and almost 1-year-old girl with SCID (severe combined immune deficiency. Receiving news that her daughter would spend many months of her first year of life in the hospital, strengthened her empathy for patients learning of abnormalities on their routine ultrasounds. Laura has found her experience with her daughter to further her passion in the field of sonography with a goal of giving the highest of care to each patient and their growing families.
WHAT YOU WILL DISCOVER IN THIS EPISODE Medicine: How she found out her daughter had no immune system Emmy's first year with severe combined immunodeficiency Why she could not breast feed her baby Why the treatment for SCID was not straightforward Why they decided not to wait for a thymus Marriage: How Baby's illness affected her marriage Deciding early on she did not want a divorce How her marriage was put on hold How they recovered quickly, despite the arguments Why her hubby said, “It's okay...I am just going to turn you in for a younger, hotter model” Motherhood: Why she decided to take a leave from fetal sonography Why abnormal results may not mean the worst thing A Mother's job is to worry TAKE HOME POINTS FROM LAURA HALL Before telling bad news to your patient, imagine having no idea what half the words out of your own mouth mean...and getting slapped in the face with FEAR. How you think a patient should handle this? Sometimes as physicians we get so used to telling our patients about some new disease, we forget their life is flashing before their eyes. They don't know what we know. They are scared. They want all the answers. Instead of becoming annoyed that they don't understand, they won't accept a diagnosis, or they won't do what we recommend, try turning toward self-compassion. There is a lot of "We don't know in medicine." Medicine is not just a science. It is also an art. We must remember that patients are not aware of how much we actually do not know and how much time a diagnosis can actually take to make. Understanding that our patients may be sad, angry, or upset is key. Their feelings are not an attack on who we are or our profession. Just accepting this may is the first step. Allow your patients to be angry, irritated, sad and even confused. This is all normal. Drop the ego. Apologize. Make up! Love unconditionally. We may get into arguments and say choice words to our hunny. Can we recover quickly? WALK AWAY ASKING YOURSELF Do I want all the control of things I have no control over? Do I allow my patients to have all the feelings? Am I good at letting go of my ego? How do I recover after an argument with my spouse? I still have a few 1:1 coaching spots open for you! If you hate getting into fights with your spouse, this is your invitation to spend more of your precious moments at home IN LOVE instead of being angry, upset, or annoyed! RSVP NOW! Who would you be if you felt less misunderstood by your spouse and more appreciated in your marriage? No time is better than now and no investment is as valuable as this investment in yourself. And don't forget to join the party on FB! Medicine, Marriage & Money And 39.6 community
In this episode, we review the high-yield topic of Severe Combined Immunodeficiency Disorder (SCID) from the Immunology section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets --- Send in a voice message: https://anchor.fm/medbulletsstep1/message
You're listening to the voice of Caroline Nachem who currently lives in VA with her husband and two children. She graduated from Old Dominion University in Virginia with a degree in history and studied anthropology. She became a stay-at-home mom when her daughter was born, and shortly after was inducted into medical motherhood. She spent the next several years caring for her daughter as she had ups and downs in her health. She also gave birth to her son as well who are now 7 and 5. In the podcast episode, Caroline will share her story and her advice to new moms in a similar situation, caring for a child with a genetic condition. Her message “You're not alone. Interview Questions: Your newborn was diagnosed with a condition through NBS. Can you tell us about how you found out about the screen and what happened next? Could you share your process in caregiving to your child with SCID? Any advice for new moms? Researchers discovered the test to screen for SCID and helped refined the treatments. What is one common myth about newborn screening research in SCID? Before your child was diagnosed with SCID were you aware of NBS? What do you think prospective parents should know about newborn screening? How has being a member of NBSTRN changed your thinking on newborn screening? What does NBS research mean to you? To learn how you can help advance newborn research, advocate for rare disease screening and treatment, and learn about important discoveries, become a member of the Newborn Screening Translational Research Network by visiting our website at www.nbstrn.org. Thank you for listening to this episode of Newborn Screening SPOTlight. If you like our podcast, please subscribe and share an episode with your colleagues, friends and family. Get involved! Stay informed! Help us advance discoveries! Together, let's increase the impact of newborn screening research by listening to your stories.
This episode covers severe combined immunodeficiency syndrome (SCID).Written notes can be found at https://zerotofinals.com/paediatrics/immunology/scid/ or in the immunology section of the Zero to Finals paediatrics book.The audio in the episode was expertly edited by Harry Watchman.
Judy Shizuru, MD, Blood and Marrow Transplant Specialist, Stanford University School of Medicine, discusses clinical data from an ongoing phase 1 trial of JSP191 in patients with severe combined immune deficiency (SCID).SCID is a group of inherited immune system disorders characterized by abnormalities with responses of both T cells and B cells. Common symptoms include an increased susceptibility to infections including ear infections; pneumonia or bronchitis; oral thrush; and diarrhea.As Dr. Shizuru explains, JSP191 is a humanized monoclonal antibody in clinical development as a conditioning agent that clears hematopoietic stem cells from bone marrow.Preclinical studies have shown that JSP191 as a single agent safely decreases normal and diseased hematopoietic stem cells, including in animal models of SCID, myelodysplastic syndromes (MDS) and sickle cell disease (SCD). JSP191 is currently being evaluated as a sole conditioning agent in a phase 1/2 trial evaluating the safety and tolerability of JSP191 in patients undergoing hematopoietic cell transplant for SCID. JSP191 is also being evaluated in a phase 1 study in patients with MDS or acute myeloid leukemia (AML) who are receiving hematopoietic cell transplant. To learn more about SCID and other rare autoimmune disorders, visit https://checkrare.com/diseases/autoimmune-auto-inflammatory-disorders/
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