Demystifying NMO & MOG

Demystifying NMO & MOG

di The Sumaira Foundation
MedicinaScienze naturali
Stagione 3

Episode 26 | The Employment Impact of NMO & MOG w/ Dr. Farrah Mateen

In the second part of our series on working with NMO and MOG, we are joined by Dr. Farrah Mateen. This year she published work that focuses on the socioeconomic impact of NMOSD on patients and caregivers. The work of Dr. Mateen and her team provides us with one of the most in-depth looks at the psychosocial toll, risks, unmet needs, and opportunity loss due to NMOSD. ABOUT US: The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech. SOCIAL & WEBSITE: Farrah Mateen, MD, PhD Website - https://doctors.massgeneralbrigham.org/provider/Farrah+J+Mateen/255866 Global Neurology Research Group - www.massgeneral.org/neurology/research/global-neurology-research-group Twitter - https://twitter.com/FarrahMateen Connect With UsWebsite - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO TIMESTAMPS/TOPICS: 00:01:15 Dr. Farrah Mateen 00:03:29 Impact of NMOSD on Employment 00:05:53 What We Can Learn From This Research 00:07:48 Barriers to Employment 00:10:45 Burden of Treatment 00:15:38 Time to Diagnosis 00:21:17 Age of Onset and Future Opportunities 00:24:48 The Role of Mental Health on Returning to Work 00:29:32 Unmet Needs 00:38:36 Disclosing Illness 00:41:11 Comparing NMOSD's Impact 00:44:49 Impact on Caregivers 02:34:00 Future of this Research LINKS: Mateen FJ, Trápaga Hacker CM. Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods. Front Neurol. 2023 Mar 9;14:1142640. doi: 10.3389/fneur.2023.1142640. PMID: 36970509; PMCID: PMC10033531. https://www.frontiersin.org/articles/10.3389/fneur.2023.1142640/full Trapaga Hacker CM, Hjerthen IG, Shirkoohi A, et al. Impact of NMOSD on employment: a global survey. Presented at: 2023 ACTRIMS Forum; February 23-25; San Diego, CA. Abstract P320. https://www.frontiersin.org/articles/10.3389/fneur.2023.1142640/full CREDITS: Producer & Host - Brian Dawson Guest Photo - Mass General Hospital Music - Denys Kyshchuk from Pixabay
S3 · E8
27 giu 2023
54:38

Episode 25 | Responding To Life’s Challenges Featuring Dr. Maggie Kang

Many people will recognize this episode’s guest as “Nell’s mom.” But today, we are focusing on the journey of Dr. Maggie Kang, whose world was shaken to its core when her daughter was diagnosed with NMOSD. Bogged down by the stress and the uncertainty of the future, she consulted a coach. Maggie soon realized she was the barrier to moving forward. The results were so profound she became a certified life coach focused on supporting the rare disease community, especially moms.Last year she shared her experiences at TEDxCherryCreekWomen, and she is here today to continue that conversation about how those early days impacted her family and, ultimately, what she learned that could help us all work through pain and suffering.ABOUT US:The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Maggie KangWebsite - https://maggiekangmd.comVoices of NMO - www.sumairafoundation.org/maggies_nmo_story_finding_miraclesTEDxCherryCreekWomen - https://youtu.be/Dgr_Ng9Dt6cConnect With UsWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOTIMESTAMPS/TOPICS:00:00:59 Dr. Maggie Kang00:02:16 Nell's Story00:07:35 Changes in Family Dynamics00:10:11 Balancing Mom vs. Doctor00:11:58 Realizing You Need Help00:17:19 Not Everyday Will Be Rosy00:18:35 How Life Coaching Can Help00:20:48 Working Through Pain00:21:55 Writing Your Narrative00:26:04 The Ripple Effect of Finding Joy00:28:57 Responding With Pain and Suffering00:31:10 Mom GuiltLINKS:My Hospital Story by Nell Choi - https://www.amazon.com/My-Hospital-Story-Nell-Choi/dp/1982262842CREDITS:Producer & Host - Brian DawsonGuest Photo - Maggie KangMusic - Denys Kyshchuk from Pixabay
S3 · E7
13 giu 2023
41:32

Episode 24 | Working with NMO & MOG

In this episode, we are joined by Anessa Powell to discuss the many challenges that people with chronic illnesses face in the workplace, from disclosing their illnesses to finding opportunities and navigating professional relationships.Following her Addison’s Disease (Primary Adrenal Insufficiency) diagnosis, she focused on raising awareness that disabilities come in many forms. Her outreach efforts led Anessa and her husband, Bill, to create AllAbility Recruiting, where they strive to Leave No Ability Behind through disability employment, training, and consulting. ABOUT US: The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech. SOCIAL & WEBSITE: Anessa Powell Website - https://allabilityrecruiting.com LinkedIn - https://www.linkedin.com/in/anessa-powell/ Demystifying NMO & MOG podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation TIMESTAMPS/TOPICS: 00:00:49 Anessa Powell 00:10:45 Finding Opportunities 00:13:21 To Disclose or Not To Disclose 00:16:02 ADA, Protection for Employees & Employers 00:21:04 Accommodations 00:23:09 Managing Co-worker Relationships 00:28:54 Return to the Office 00:31:08 Post-COVID Work Etiquette 00:32:37 Breaking down Misconceptions and Barriers 00:38:10 How Organizations Can Access Untapped Potential 00:40:33 Young Adults and Entering the Workforce CREDITS: Producer & Host - Brian Dawson Cover Art - Sumaira Ahmed Guest Photo - Courtesy of AllAbility Recruiting
S3 · E6
30 mag 2023
44:43

Episode 23 | Service Dogs 101

In this episode, we are joined by professional service dog trainer Leslie Horton to talk about all things service dogs, including what they are, legal protections, and training. We try to clear up some common misconceptions and touch on how they differ from emotional support animals, behavior standards in public, and being a “Certified” service dog. She owns Most Fine Canine in Frederick, Maryland, where she has spent over 20 years training and specializing in service dogs. She is certified as a dog trainer and service dog trainer and was inducted into the International Association of Canine Professionals (IACP) Hall of Fame. Leslie is also an R.N. and the Coordinator of Inova Fairfax Hospital’s Animal Assisted Care (AAC) program overseeing teams of handlers and dogs at the health system's four facilities. Leslie's experiences as a dog trainer, medical professional, and patient give her incredible insight on a topic where there is a lot of confusion and can be pretty emotional for people. ABOUT US: The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech. STAY CONNECTED: Leslie Horton, IACP CDT, CDTA, PDTI, CSDT Website - https://www.mostfinecanine.net Facebook - https://www.facebook.com/HortonLeslieL Demystifying NMO podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation TIMESTAMPS/TOPICS: 00:00:58 Leslie Horton 00:02:14 Service Dogs Vs. Emotional Support Animals 00:02:58 Where Can Service Dogs Go? 00:07:06 What Can A Business Ask? 00:08:32 "Certification" 00:08:51 Standards Of Behavior 00:10:55 Fake Service Dogs 00:18:24 What Is The Process Of Getting A Service Dog? 00:26:57 Training A Service Dog LINKS: ADA Requirements: Service Animals https://www.ada.gov/resources/service-animals-2010-requirements/ ADA Service Animal FAQ https://www.ada.gov/resources/service-animals-faqs/ IACP - Service Dogs Overview https://www.canineprofessionals.com/service-dogs-overview IACP - Business Resources Regarding Service Dogs https://www.canineprofessionals.com/business-resources-regarding-service-dogs CREDITS: Executive Producer - Host - Brian Dawson Music - Denys Kyshchuk from Pixabay
S3 · E5
14 mar 2023
37:24

Episode 22 | Resilience & Chronic Illness

In this episode, Brian talks with Dr. Amy Sullivan about resilience and how chronic illness impacts mental health. In her role as an Associate Professor of Medicine and, the Director of Behavioral Medicine & Research at the Mellen Center for MS, Director of the Neurological Institute Engagement and Wellbeing, Dr. Sullivan works with patients and families dealing with the impact of illness. She has also become a leading voice in physician and caregiver self-care, burnout, and psychological health and spearheaded Mellen Center's efforts that led to the National Psychologically Healthy Workplace Award, Best Practice by the American Psychological Association. ABOUT US: The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech. STAY CONNECTED: Amy Sullivan, PsyD, ABPP Website - https://my.clevelandclinic.org/staff/13526-amy-sullivan Twitter - https://twitter.com/DrAmyBSullivan Demystifying NMO podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation TIMESTAMPS/TOPICS: 00:01:25 Dr. Amy Sullivan 00:01:49 What is Resilience? 00:03:52 Where Does Resilience Come From? 00:10:21 Resilience Fatigue 00:12:23 The Grieving Process in Chronic Illness 00:15:00 How to Center Yourself 00:16:33 Wellness 00:18:47 Motivation 00:19:56 Asking for Help 00:20:27 Caring for Caregivers & Breaking Down Stigmas CREDITS: Host - Brian Dawson Music - Denys Kyshchuk from Pixabay Guest Photo - Cleveland Clinic
S3 · E4
28 feb 2023
24:12

Episode 21 | Learning Through Social Media & Clinical Trials w/ Dr. Aaron Boster

In today’s episode, we welcome an award-winning physician, researcher, and educator, Dr. Aaron Boster. He is a board-certified Neurologist and the founder and President of the Boster Center for Multiple Sclerosis in Columbus, Ohio. We had the pleasure of catching up with Dr. Boster to talk about harnessing the power of social media to provide 24-7 access to information reliable, understandable medical information. He also breaks down the importance of clinical trials and walks us through each phase of a study and what a participant can expect. ABOUT US: The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech. STAY CONNECTED: Aaron Boster, M.D. Website - https://bosterms.com Youtube - https://www.youtube.com/c/AaronBosterMD Twitter - https://twitter.com/AaronBosterMD Demystifying NMO podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation The Connor B Judge Foundation Website - https://www.connorbjudgefoundation.org Facebook - https://www.facebook.com/cbjvnmo TIMESTAMPS/TOPICS: 00:00:21 Dr. Aaron Boster 00:01:54 Social Media for Patient Education 00:03:39 Being an Active Participant in Your Care 00:04:05 Shared Clinical Decision Making 00:05:21 Better Communication 00:07:21 Permission To Be Selfish 00:10:48 YouTube 00:11:29 Clinical Trials 00:12:25 The Importance of Being Part of Clinical Trials 00:13:34 The Phases of a Clinical Trial 00:21:00 Finding Clinical Trials 00:26:39 A Paradigm Shift 00:29:48Killing Old Myths LINKS: Dr. Noster’s Multiple Sclerosis Clinical Research YouTube Playlist https://youtube.com/playlist?list=PL3a4GpjWLtCiSkGgtl4UlnFFnk1Fhevkt CREDITS: Host - Chelsey Judge Editor - Brian Dawson Music - Denys Kyshchuk from Pixabay Guest Photo - Boster Center for Multiple Sclerosis
S3 · E3
14 feb 2023
31:08

Episode 20 | Health Literacy - Sifting Through All the C.R.A.A.P.

Brian spent more than twenty years working in emergency management as a paramedic & law enforcement officer before getting a Master’s degree in Library & Information Science. While serving as the Acting Deputy Secretary of Education for Libraries with the Pennsylvania Department of Education, a cold triggered an autoimmune response leaving him blind & paralyzed from the chest down. Following an NMO diagnosis, he needed to understand more about the disease. As an information professional, he was shocked that much of the information he got from his care team or found online was outdated, not supported by science, or just plain wrong. After eighteen months of relapses & research, a consultation with an NMO specialist led to a diagnosis of MOGAD & the proper treatment that gave him his life back. Brian & Chelsey talk about how critical it is to find reliable, scientifically based information to make the best decisions about your health. ABOUT US: Demystifying NMO & MOG is a Sumaira Foundation (TSF) project & made possible with the generous support of Genentech. STAY CONNECTED: Brian Dawson Twitter twitter.com/bkdawson1313 Website www.sumairafoundation.org/brians-mog-story-life-goes-on LinkedIn www.linkedin.com/in/briankdawson Demystifying NMO podcast Instagram www.instagram.com/demystifying_nmomog Twitter twitter.com/DemystifyingNMO The Sumaira Foundation Website www.sumairafoundation.org TIMESTAMPS: 00:01:17 Health Literacy? 00:04:02 Why is it so Important? 00:08:58 Impact on Health Outcomes 00:15:16 Important Questions to Ask 00:17:20 Provider Responsibility 00:20:36 Good vs. Bad Information 00:23:36 Science Evolves 00:26:08 Finding Good Information LINKS: Find your Local Library www.careeronestop.org/LocalHelp/CommunityServices/find-libraries.aspx TSF NMO Resources www.sumairafoundation.org/nmosd-resources TSF MOGAD Resources www.sumairafoundation.org/mogad-resources National Library of Medicine www.nlm.nih.gov/portals/public.html PubMed Database https://pubmed.ncbi.nlm.nih.gov/ Medline Plus https://medlineplus.gov CREDITS: Host -Chelsey Judge Producer - Brian Dawson Music - Denys Kyshchuk from Pixabay
S3 · E2
31 gen 2023
33:07

Episode 19 | Demystifying NMO & MOGAD: All Part of the Spectrum, All in it Together

Season three starts with big news about the podcast. We talk with Sumaira Ahmed of The Sumaira Foundation about the podcast's growth and inclusivity and introduce a new co-host, Brian Dawson. Then we were joined by one of the leading NMO and MOG researchers, Michael Levy, MD, Ph.D. Dr. Levy is the Research Director of the Division of Neuroimmunology & Neuroinfectious Disease at Massachusetts General Hospital and is an Associate Professor at Harvard Medical School. ABOUT US: The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech. STAY CONNECTED: Michael Levy, MD, Ph.D Twitter - https://twitter.com/mlevy18 Website - https://doctors.massgeneralbrigham.org/provider/Michael+Levy/1090088 Demystifying NMO and MOG Podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO Website - https://www.sumairafoundation.org/awareness/demystifying-nmo/ The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation TIMESTAMPS: 00:00:00 Launching Season 3 with Big News 00:01:00 The Merger 00:01:48 NMO & MOG, All In It Together 00:04:08 New Co-Host 00:05:26 A Preview of Season 3 00:07:00 Michael Levy, MD, Ph.D. 00:08:05 From MS to NMO, to MOG. 00:09:54 NMO & MOG Overlaps 00:11:47 Different Mechanisms, Similiar Outcomes 00:13:05 Diagnostic Differences 00:14:28 MOG ~vs~ MS 00:17:22 Longterm Outcomes 00:19:30 Being Misdiagnosed 00:21:22 Treatment Overlaps 00:24:44The Future of MOG & Clinical Trials LINKS: NMOSD Resources - https://www.sumairafoundation.org/nmosd-resources/ MOGAD Resources - https://www.sumairafoundation.org/mogad-resources/ CREDITS: Host - Chelsey Judge Producer & Co-Host - Brian Dawson Music - Music by Denys Kyshchuk from Pixabay Guest Photo - The Sumaira Foundation
S3 · E1
17 gen 2023
29:10
Stagione 2

Illuminating the Darkness of Pediatric NMOSD Through Storytelling - Meet Nell Choi'

In the season finale of season 2, Chelsey reviews the topics covered and seeks feedback from listeners for season 3! To top off season 2, Demystifying NMO features Nell Choi, who shares her powerful and inspiring NMO story and optimistic perspective. Nell is a 13 year old accomplished NMOSD patient advocate. She is a published author of 'My Hospital Story', aiming to foster connection with others going through similar traumatic health journeys. She has also brought national awareness of NMO by appearing on CBS evening news to share her story. Recently, she met with President Joe Biden and First Lady Jill Biden, presenting them with a copy of her book. In a candid chat with Chelsey, Nell shares: At 9 years old, Nell faced the mysterious and confusing onset of NMO, hospitals and the overall healthcare system. Of note, pediatric cases makes up about 3-5% of NMOSD. Nell coped through journaling and finding gratitude for her parents and the gifts she would find through her journey, including finding connection in the NMO community, as well as herself and core values through the adversity. Her authorship of 'My Hospital Story' taught her the importance of connection with others, and that we all have the power to make an impact. Nell's hopes for the future of the NMO community include finding a cure and making sure all impacted by NMO are able to share their story to become more connected. To learn more about pediatric NMO, here is a scientific journal mentioned in this episode: https://www.frontiersin.org/articles/10.3389/fped.2020.00339/full
S2 · E9
31 gen 2022
17:11

NMOSD Diagnosis Part 2: Control What You Can

Part 2 of our conversation on the NMOSD diagnosis, we discuss the personal 'what now?' element...On the individual level, what does coping and living with a newly obtained NMOSD diagnosis look like? What can you do about it? To answer these questions, Demystifying NMO is delighted to have guest Taylor Ann Macey on the pod to discuss her personal patient experience with her NMOSD diagnosis. Taylor is a wife, mother, Brigham Young University graduate and life coach, with an educational background in fitness and nutrition, Taylor is candid about her NMOSD diagnosis story: What her journey to the NMOSD diagnosis looked like How she coped with her new life post NMOSD diagnosis Controlling what you can by implementing an integrative approach to NMOSD: Building a trusted clinical care team that incorporates acute relapse management with preventative treatment based on shared decisions Movement! Being mindful and respectful of your body's capabilities and limits, while moving/exercising as you can to show your body love and improve outcome Good, well-balanced nutrition Focusing on your mental and emotional health! Going inward to process difficult life events like an NMOSD diagnosis is critical, and finding a trusted therapist can be impactful and helpful. Approaches to identifying all the misinformation on the internet!
S2 · E8
10 gen 2022
24:27
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