ABCs of NMOSD

In the "ABCs of NMOSD" episode titled, "Managing the Dread of Relapse," Landy Thomas of SRNA was joined by Heather Dawn Sowalla. Heather shared her journey with neuromyelitis optica spectrum disorder (NMOSD) [00:01:54] and discussed the fear of relapse associated with the condition [00:14:04]. She described how long-term misdiagnosis and numerous flares impacted her life and mental health [00:16:02]. She shared coping strategies and emphasized the importance of a supportive community and the advancements in NMO treatment [00:25:49]. Finally, Heather encouraged those newly diagnosed to seek a doctor they connect with and lean on the community for support [00:34:12].

Heather Sowalla has lived most of her life in Pennsylvania. After earning her Bachelors degree in Environmental Science and her Masters degree in Environmental Studies, she returned home to her families dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for NMOSD around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly engaged to Doug, a fellow NMOSD patient, and they plan on creating a life together in Vintondale, Pennsylvania.

In the “ABCs of NMOSD” episode titled, “Social Reintegration Following an NMOSD Diagnosis,” Landy Thomas of SRNA and Kim Jackson-Matthews discussed social reintegration following an NMOSD diagnosis [00:00:14]. Kim shared her diagnosis story, including the onset of symptoms and the challenges she faced [00:04:42]. They talked about the emotional impact of the disease, how it changed Kim's life, and her strategies for maintaining a social life despite her condition [00:22:34]. Kim also offered advice for others dealing with NMOSD on how to stay connected and live their best life [01:19:17].

Kim Jackson-Matthews, a past Continuity Director with KCBS-FM / Jack93.1 radio station, is well known in the rare patient community for being an advocate for Neuromyelitis Optica Spectrum Disorder, NMOSD. Her passion for helping people with rare diseases and those in underrepresented areas along with her personal experience with chronic disease has leveraged her as the Diversity, Equity, Inclusion and Accessibility Liaison with the Guthy-Jackson Charitable Foundation. As a 2nd degree Black Belt in Taekwondo, she is very passionate about health and wellness. For over twenty-five years Kim has been a licensed Personal Fitness Trainer whose focus is to educate and motivate people to, “Just Keep Moving!” Kim has held the office of Co-Chair of the Physical and Mental Health Committee as a member of Delta Sigma Theta Sorority, Inc. Los Angeles Alumnae Chapter and was excited to spread the word about NMOSD during their Self-Care Summit: Seven Days of DeltaCare now on YouTube. Kim has gone to Washington, DC for Rare Disease Week on Capitol Hill with RDLA to speak to state stakeholders. She will continue to use her voice to advocate for those who can’t do so for themselves.

In this episode of "ABCs of NMOSD," Landy Thomas of SRNA hosted a discussion about the experiences of men who are living with neuromyelitis optica spectrum disorder (NMOSD). Doug Kirby and Andrew Jopson shared their diagnosis journeys, highlighting the physical and emotional challenges they faced [00:04:20]. They delved into the impact of the disorder on their personal lives, careers, and relationships, offering advice to newly diagnosed men [00:17:24]. Finally, they emphasized the importance of support groups and looking towards the future with hope [00:32:28].

Doug Kirby has lived most of his life in Utah. After earning a degree in microbiology from BYU, he went to the University of Washington to gain his master’s degree in environmental health science. Doug also spent two years in South Korea as a church missionary. He has been married to his wife, Holly, for 39 years, and they have 5 kids, all boys but the first four, and eight grandchildren. Doug spent the first ten years of his career in the environmental field working at two different hazardous waste disposal sites and then switched to information technology. During his career, Doug has been a developer and manager. He currently lives in Herriman, Utah where he and Holly are looking forward to retirement in a little over three years. Doug was diagnosed with NMOSD when he was 56 in 2017. His vision is fine, but he has some physical difficulties including numbness and trouble walking that he has learned to live with. Doug enjoys meeting with and learning from others who are going through similar challenges.

Andrew Jopson is a PhD candidate at Johns Hopkins University, researching how Medicaid-funded long-term services and supports (LTSS) influence the care experiences of older adults with disabilities and their caregivers. His research, policy, and advocacy interests are motivated by his experience as a caregiver for his brother. He earned his BA at the University of California, Berkeley and MPH at the University of Washington (UW) in Seattle. Andrew was diagnosed with seronegative NMOSD, lupus, and Graves' Disease in 2022 following an attack and extended hospitalization. He is an aviation enthusiast who enjoys swimming, making people laugh, and reminding everyone that his chocolate chip cookies were awarded second place in the 2019 Washington State Fair.

For this “ABCs of NMOSD” episode titled, “Transitioning from Pediatric to Adult Care with NMOSD,” Dr. Jonathan Galli joined Krissy Dilger of SRNA. Dr. Galli provided insights into the disorder and its presentation across age groups, emphasizing the importance of aggressive treatment [00:01:35]. He highlighted differences in treatment approaches and medication availability between pediatric and adult populations [00:05:54]. The discussion also explored the transition process, including timelines, support systems, and considerations for patients and families, aiming to ensure a smooth shift in care [00:10:45].

Dr. Galli received his medical degree from the University of Vermont College of Medicine in Burlington, VT, and completed his neurology residency at The University of Utah in Salt Lake City, UT, where he worked with Fellowship mentor, Dr. Clardy. As part of his fellowship training, he conducted research to look for biomarkers in individuals with NMOSD. The research investigated whether individuals have aquaporin¬-4 (AQP¬4) autoantibodies prior to their symptom onset of NMOSD, and also looked for other inflammatory biomarkers. He hopes the study will help us to understand how biomarkers occur over the course of the disorder, which will hopefully help identify predictors of disease development, and ultimately therapeutic targets.

Krissy Dilger of SRNA was joined by Dr. Robert Shin. Dr. Shin began by summarizing the role of neuro-ophthalmologists and how they specialize in the intersection of neurology and ophthalmology, and address vision-related issues, including those associated with neuromyelitis optica spectrum disorder (NMOSD). Dr. Shin talked about the tests used to diagnose visual issues. He discussed how distinguishing NMOSD from other conditions that cause optic neuritis, like multiple sclerosis (MS) and MOG antibody disease (MOGAD), can be challenging. He emphasized the importance of rapid and proper treatment of optic neuritis. Finally, Dr. Shin described how low-vision therapy may help those with significant visual impairment.

SRNA's Krissy Dilger was joined by Dr. Hamza Coban to discuss neuromyelitis optica spectrum disorder (NMOSD) relapses. They discussed distinguishing between true relapses, pseudo relapses, and Uhthoff's phenomenon. Dr. Coban discussed the importance of early diagnosis and prompt treatment to prevent severe and debilitating symptoms. He described various treatments to prevent relapses. He also talked about the timing of relapses and when to consider switching therapies.

For this “ABCs of NMOSD” episode, Rebecca Whitney of SRNA was joined by Dr. Michael Levy. Dr. Levy gave an overview of I-CAN, a Phase 2 study of inebilizumab in children with aquaporin-4 positive neuromyelitis optica spectrum disorder or NMOSD. As one of the principal investigators for the study, he shared details about inclusion criteria and inebilizumab, brand name Uplizna™. Dr. Levy also discussed what someone can expect if they choose to participate in this trial, how participation would impact someone’s current treatment, and the timeline of this trial. Additional information is available here:

https://wearesrna.org/clinical-studies-and-trials/study-of-inebilizumab-in-pediatric-subjects-with-neuromyelitis-optica-spectrum-disorder/ 

https://clinicaltrials.gov/study/NCT05549258?term=NCT05549258&aggFilters=status:not%20rec&rank=1

In this episode of “ABCs of NMOSD” titled “Sexual Dysfunction and NMOSD,” Krissy Dilger of SRNA was joined by Dr. Philippines Cabahug. Dr. Cabahug defined the types of sexual dysfunction for people who have impairment in the spinal cord. She summarized treatments that are available for men and women. She discussed considerations for mobility and whether NMOSD may affect fertility. Finally, Dr. Cabahug described physical rehabilitation that can improve sexual dysfunction and how to choose a health care provider to assist with evaluation.

Dr. Mary Rensel and Dr. Amy Sullivan joined Krissy Dilger of SRNA for an “ABCs of NMOSD” podcast titled “Mental Health and NMOSD.” The experts began the conversation by sharing how behavioral medicine teams support people who are adjusting to a chronic disease or change of function. They also reviewed some of the tools that can enhance quality of life and address depression, fatigue, and pain levels. These include breathing tools, visualization, body scanning, and mindfulness-based therapy. Finally, Dr. Rensel and Dr. Sullivan discussed support groups and stress relief for care partners and loved ones of people who are receiving care.

Dr. Michael Yeaman and Dr. Terry Smith joined Krissy Dilger of SRNA for an “ABCs of NMOSD” podcast titled “What is Tolerization?" The experts began by giving an overview of immune detection and protection. They explained how immune tolerance is established. The experts provided information on how immune tolerance could be lost during autoimmune disease. Finally, they discussed how immune tolerance can be restored and how these corrections might be applied to treatments and cures for NMOSD and MOGAD. There are visual slides that accompany this episode. The visual presentation can be found at https://youtu.be/PtYzqrNi6pg