SRNA Soundwaves

Warning: This presentation contains adult language and content. It is not suitable for anyone under the age of 18.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. Linda Nguyen and Dr. Benjamin Greenberg joined Dr. GG deFiebre of SRNA for the third episode of “ADEM Academy.” This episode is titled “Building Your Healthcare Team for Successful Symptom Management for Those with ADEM.” Dr. Nguyen and Dr. Greenberg discussed physical, occupational, and speech therapy for the beginning and duration of the recovery process. They recommended types of doctors for a newly diagnosed person to prioritize and special considerations for someone who tests positive for either the MOG or anti-aquaporin-4 antibody. They also shared advice on choosing a medical professional and the importance of having early conversations with a hospital social worker and the insurance company to identify options for inpatient rehabilitation before discharge to that location. Next, they explained the ways that mental health professionals can help people to be aware of relapse signs and manage potential behavioral issues or emotional strain. In conclusion, Dr. Nguyen and Dr. Greenberg provided a summary of care for a patient with ADEM, five or ten years down the line and beyond.

Krissy Dilger of SRNA and Peter Fontanez from The MOG Project were joined by Dr. Farrah Mateen for the second episode of “ADEM Academy,” an ongoing podcast series about ADEM or acute disseminated encephalomyelitis. This episode is titled, “Adult ADEM.” Dr. Mateen discussed how adults typically present with ADEM, the diagnostic process, and how it differs in other stages of life. She explained how ADEM can affect adults cognitively, psychologically, and behaviorally, as well as considerations for geriatric patients. Dr. Mateen also described strategies for patients who have MOGAD, bowel and bladder issues, sexual dysfunction, and summarized the diagnostic and treatment process. The episode ended with questions from the online audience.

Dr. GG deFiebre of SRNA was joined by Dr. Cyrena Gawuga for an “Ask the Expert” podcast on "Disability and Rare Neuroimmune Disorders." Dr. Gawuga began by describing how medical conditions like rare neuroimmune disorders are related to disability. She gave an overview of language and models for disability, and how these impact our views of disability. She shared how her experience with this identity has changed over time. Finally, Dr. Gawuga offered suggestions for connecting with others in the community, as well as navigating sensitive conversations with family or friends.

Dr. Benjamin Greenberg joined Dr. GG deFiebre of SRNA on our podcast series, “Ask the Expert: Research Edition.” This episode is titled “Update: Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells into Patients with Transverse Myelitis.” Dr. Greenberg discussed the background and status of the study. It is the first of its kind to look at the potential use of stem cells to repair the damage in spinal cords affected by myelitis, inflammation in the spinal cord. He also explained the screening process, enrollment, and next steps of the study.

For this episode of “Ask the Expert: Research Edition,” Krissy Dilger of SRNA was joined by Dr. Michael Levy. Dr. Levy gave an explanation of MOG antibody disease (MOGAD) and an overview of CosMOG, an ongoing clinical trial of rozanolixizumab for MOGAD treatment. He shared details about safety issues, the design of the trial, inclusion criteria, and where someone could learn more about the trial and participation.

Krissy Dilger of SRNA was joined by Dr. Benjamin Osborne for an “Ask the Expert” podcast on "What to Expect Living with NMOSD and MOGAD Long-Term." Dr. Osborne began by explaining treatments available for both neuromyelitis optica spectrum disorder (NMOSD) and MOG antibody disease (MOGAD). He discussed how he as a clinician evaluates a treatment and under which conditions he would recommend a person change or end long-term therapies. Finally, Dr. Osborne provided information on how a symptom differs from a medication side effect and suggested supplements and lifestyle practices that may improve long-term quality of life.

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Paul Turner joined Dr. GG deFiebre of SRNA to talk about his experience with transverse myelitis (TM). They discussed his initial symptoms and diagnosis, rehabilitation, treatment, and goals.

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Melanie Flood joined Krissy Dilger of SRNA to talk about her experience with neuromyelitis optica spectrum disorder (NMOSD) with Sjögren's syndrome. They discussed her initial symptoms and diagnosis, treatments, rehabilitation, and life today.

The Community Spotlight edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Melanie Flood joined Krissy Dilger of SRNA to talk about her experience with neuromyelitis optica spectrum disorder (NMOSD) with Sjögren's syndrome. They discussed her initial symptoms and diagnosis, treatments, rehabilitation, and life today.