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Demystifying NMO

Medical

Neuromyelitis Optica Spectrum Disorder (NMOSD) is a neurological autoimmune disease that causes blindness and paralysis. While NMOSD is a rare disease, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation and Connor B J Foundation work to simplify the science associated with NMOSD and related neuro-immune disorders, bringing together patients and experts.

Neuromyelitis Optica Spectrum Disorder (NMOSD) is a neurological autoimmune disease that causes blindness and paralysis. While NMOSD is a rare disease, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation and Connor B J Foundation work to simplify the science associated with NMOSD and related neuro-immune disorders, bringing together patients and experts.

Location:

United States

Description:

Neuromyelitis Optica Spectrum Disorder (NMOSD) is a neurological autoimmune disease that causes blindness and paralysis. While NMOSD is a rare disease, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation and Connor B J Foundation work to simplify the science associated with NMOSD and related neuro-immune disorders, bringing together patients and experts.

Language:

English

Contact:

4403159317


Episodes

Interpersonal Relationships and NMO

2/28/2021
In this episode, Sumaira Foundation for NMO Patient Ambassadors Julie Aldridge, Kristen Hewitt and Alexis Marta share with host Chelsey their experiences navigating relationships with NMOSD. Together, they take a personal look at how NMO has shaped their friendships, ties with family, as well as with co-workers, classmates and professors. They discuss the strengths of communication, honesty and advocacy in their relationships, and how NMO has amplified them.

Duration:00:20:59

Vaccine Preparedness

12/14/2020
The Covid-19 pandemic has ravaged the world, and while we're going through another dark surge, there is hope- vaccines. The FDA just authorized and approved the first Covid-19 vaccine. While this is exciting, it also brings up a lot of questions, especially for people in the NMO community. In this episode, host Chelsey, PhD immunologist, chats with Sumaira on the basics of vaccines, and then talks with neuroimmunologist and NMO clinician Mary Rensel, MD of the Cleveland Clinic Mellen Center....

Duration:00:30:47

Can't Stop; Won't Stop!

7/8/2020
In the season finale of season 1, Chelsey chats with Sumaira Ahmed of The Sumaira Foundation (TSF) for NMO for a recap on Demystifying NMO. Sumaira shares her insights as both an NMO patient, TSF founder and community leader. Chelsey and Sumaira rehash the episodes and provide their take-aways. They review the goals of the podcast, what they learned throughout the season, their favorite moments, optimism for the NMO community and what's to come.

Duration:00:17:45

What a Pain in my NMO!

5/27/2020
In this episode, host Chelsey talks all things related to NMO pain with Dr. Shamik Bhattacharyya, a neurologist at Brigham and Women's Hospital and assistant professor of neurology at Harvard Medical School. Chelsey learns that pain is very prevalent in NMOSD, and presents itself in many ways. They chat a bit about the science of NMO-related pain, exploring how and why it's different than pain related to multiple sclerosis. Although there is no 'magic bullet' to wipe out NMO-pain, Dr....

Duration:00:27:09

Episode 7: Navigating the Insurance Labyrinth, with COVID19 in Mind

4/2/2020
In this episode, Chelsey chats with Marissa Shackleton, Executive Director at the Elliot Lewis Center in Massachusetts. Marissa has 8 years of experience working with patients with NMO and multiple sclerosis and is active with the National MS Society and National Infusion Center Association. She’s a national speaker on access, reimbursement, infusion centers and practice management, and is passionate about patient care and access to affordable treatment. Marissa provides insight on...

Duration:00:17:51

Episode 6: Docs' Perspective on NMO, Postpartum

3/10/2020
Chelsey again speaks with Dr. Kaplan and Dr. Galetta, both practicing neurologists at Brigham and Women's Hospital and associated with Harvard Medical School. On this episode, they focus their discussion on postpartum considerations in NMOSD patients. They chat about topics that women living with NMO may experience immediately following giving birth. Questions covered: What do I need to know about breastfeeding? What do we know about treatment safety with breastfeeding? What about managing...

Duration:00:11:38

Episode 5: What to Expect When You're Expecting with NMO

2/2/2020
On this episode, Chelsey follows up on the topic of sex and NMO and gets into a discussion on pregnancy with NMO. Chelsey explores this topic with Tamara Kaplan, MD and Kristin Galetta, MD, both practicing at Brigham and Women's Hospital and associated with Harvard Medical School. They discuss managing NMO treatments with pregnancy, how to treat a relapse while pregnant, potential safety concerns and more. Both Dr. Kaplan and Dr. Galetta emphasize that a successful pregnancy is possible...

Duration:00:16:20

Episode 4: Let's Talk About Sex, Baby

1/6/2020
Sexual dysfunction is a common invisible symptom in NMOSD, but given the intimate nature of the topic, it's not discussed as much as it should. What exactly is sexual dysfunction? What causes it? What can be done about it? Hear the answers in a discussion between Chelsey and Dr. Tamara Kaplan, a neurologist at Brigham and Women's Hospital and assistant professor in neurology at Harvard Medical School. Dr. Kaplan shares her expertise in treating NMOSD and MS patients, including managing...

Duration:00:17:00

Episode 3: Gratitude through NMO

11/24/2019
In episode 3 of Demystifying NMO, Chelsey shares her conversations with 3 inspiring individuals living with NMOSD: Chelsey Tucker, Ron Crowe and Marie Newbrough. In their chats, they share their experiences and emotional journeys through finding their NMO diagnosis and coping with the loss of their old lives. Each tell how they have worked to manage these whirlwind emotions, and have even found new perspectives that in some ways make them find gratitude in the new lives. We hope you...

Duration:00:21:10

Episode 2: NMO Treatments: Acute vs Maintenance

10/24/2019
Episode 2 of Demystifying NMO by The Sumaira Foundation (TSF) for NMO and Connor B Judge Foundation (CBFJ) focuses on NMO Treatments: Acute vs Maintenance. Follow along to hear a candid conversation between Connor, of the CBJF and NMO patient, and his sister Chelsey, also scientific advisor with the CBJF. In their discussion, they talk about the differences in treatments to manage an active relapse versus to help prevent relapse. Glossary of Terms Used AQP4: aquaporin-4; a water channel...

Duration:00:19:53

Episode 1: Autoimmune Disease and NMOSD Overview

9/23/2019
The Sumaira Foundation and Connor B Judge Foundation are proud to present their first episode of their new joint podcast, 'Demystifying NMO!' Follow along with Austin Hoover, who lives with multiple sclerosis (the 'cousin' of NMO), and Chelsey Judge, PhD immunologist, as they chat about the basic science of autoimmune disease and NMO. They'll cover 3 main questions: 1) What is an autoimmune disease? 2) How does autoimmunity happen? 3) How does the immune response contribute to...

Duration:00:10:26