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ABCs of NMOSD
Siegel Rare Neuroimmune Association (SRNA)
35 episodes
1 day ago
ABCs of NMOSD brings together the latest information and research about all things NMOSD, from diagnosis and treatment to quality of life and what it’s like to live with NMOSD. We invite medical experts and researchers, to share the latest up-to-date research and clinical knowledge. We have conversations with individuals who have been diagnosed with NMOSD, their caregivers, and allied health professionals. We give tips on how to advocate at school and at work, where to find help and support, navigate health insurance, and work with a team of medical experts.
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Medicine
Health & Fitness
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All content for ABCs of NMOSD is the property of Siegel Rare Neuroimmune Association (SRNA) and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
ABCs of NMOSD brings together the latest information and research about all things NMOSD, from diagnosis and treatment to quality of life and what it’s like to live with NMOSD. We invite medical experts and researchers, to share the latest up-to-date research and clinical knowledge. We have conversations with individuals who have been diagnosed with NMOSD, their caregivers, and allied health professionals. We give tips on how to advocate at school and at work, where to find help and support, navigate health insurance, and work with a team of medical experts.
Show more...
Medicine
Health & Fitness
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502. Men and NMOSD
ABCs of NMOSD
1 hour 7 minutes 16 seconds
1 year ago
502. Men and NMOSD

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.

ABCs of NMOSD
ABCs of NMOSD brings together the latest information and research about all things NMOSD, from diagnosis and treatment to quality of life and what it’s like to live with NMOSD. We invite medical experts and researchers, to share the latest up-to-date research and clinical knowledge. We have conversations with individuals who have been diagnosed with NMOSD, their caregivers, and allied health professionals. We give tips on how to advocate at school and at work, where to find help and support, navigate health insurance, and work with a team of medical experts.