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.
Too Hot to Handle
Feeling the heat this summer?! People living with NMOSD/MS can experience sensitivity to temperature, particularly extremely hot or cold temperatures. In this episode, Chelsey chats with TSF ambassadors Julie Aldridge and Alexis (aka Lexi) Marta about their experiences living with NMOSD and managing temperature sensitivity. They cover:Impact of heat on NMOSD symptoms aka Uhtoff's phenomenonHeat-related symptoms vs relapseManaging heat, especially on a hot summer dayWhere to find at-no-cost cooling vestsImpact of cold on symptoms and how to manage
Dude with NMO
In this episode, we focus on a rare population: men with NMO! NMO overwhelming affects women compared to men, and we wanted to tap into the male outlook and experiences living with NMO. Host Chelsey is joined by her brother, Connor Judge, a 28 year old man living with NMO to share his male perspectives:What’s it like to be in a sea of women?How does NMO and treatments impact identity?What are the differences between the societal image of being a man vs being a man with NMO?Adapting to work and earning income before and after NMO?What's it like to date and talk about NMO to potential partners?How do you manage relationships with friends and family?
Girl Power: Women's Health and NMO
In this episode, host Chelsey gets candid on all things related to women's health and NMOSD with Sumaira Foundation Ambassador Chelsey Tucker (TN) and Dr. Tamara Kaplan, neurologist at Brigham and Women's Hospital and associate neurology professor with Harvard Medical School. Topics covered are body image and emotional well-being, NMO treatment impacts on sexual identity, effect of NMO on periods, fertility & family planning, as well as the economic impact of navigating life as a woman with NMO. Dr. Kaplan and Chelsey T, both moms, also provide their insights on motherhood through NMO. Listen along to find out how you can befriend your 'inner mean girl' and empower your sense of identity and femininity.
Interpersonal Relationships and NMO
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.
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. Sumaira and Chelsey cover the basics on vaccines: What are vaccines? What's protective immunity? What's herd immunity? What're the types of vaccines? What's the Covid vaccine timeline of distribution look like?Dr. Rensel offers her clinical insight to discuss general vaccine considerations and recommendations for the NMO community, including: What are vaccine recommendations for NMO patients? Do NMO treatments affect vaccine response? Or safety concerns? Is there an effect of vaccines on NMO relapse?Please remember that the goal of this podcast is to educate and empower you to make the most informed decisions with your health care provider. This is not medical advice- please follow up with your health care team.*Chelsey is a medical science liaison with Sanofi-Genzyme, and her role in the CBJF is independent of Sanofi-Genzyme, and views/content shared do not reflect Sanofi-Genzyme.
Season 1 Finale: Can't Stop; Won't Stop!
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.
Excellent and relevant content!
Great conversations and verified information that’s helpful for the NMOSD community!!