Podcast Series on Mental Health and Rare Neuroimmune Disorders
The Siegel Rare Neuroimmune Association (SRNA) has teamed up with Dr. Meghan Beier of Find Empathy to bring an engaging 3-part podcast series about mental health and rare neuroimmune disorders. This collaboration aligns with Find Empathy’s mission to help mental health professionals better assist patients dealing with tough chronic illnesses and medical diagnoses. Through accessible continuing education courses, mental health providers can gain valuable insights into health psychology, ultimately improving patient care and clinical outcomes. Dr. Meghan Beier, PhD, the founder of Find Empathy, is also a part-time Assistant Professor and Psychologist at Johns Hopkins, nationally recognized for her expertise in mood and cognition symptoms common to multiple sclerosis. She shared this about Find Empathy, “It is such a challenge to find mental health support, especially someone that understands the nuances of living with a rare, serious, or chronic medical condition. This is why I founded Find Empathy. I wanted to create a resource for mental health professionals to learn about medical conditions. This way their patients spend less time educating them about their diagnosis and more time working on what brought them to therapy.” Episode 1: Rare Neuroimmune Disorders – A Guide for Mental Health Professionals In this first episode, Dr. Kyle Blackburn provides an in-depth overview of disorders falling under the SRNA umbrella, including Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM). Dr. Blackburn defines neuroimmune disorders, describing clinical aspects, similarities, and distinctions between each of the disorders. The episode not only explores the clinical aspects but also delves into the emotional and personal journeys of those affected. Rebecca Whitney, SRNA Associate Director of Programs and Community Support, reflects on the impact of rare neuroimmune disorders on caregivers. “For care partners, caregivers, parents, there’s a trauma for them as well. It impacts so much—relationships and careers.” Speaking from the perspective of a parent, she emphasizes the life-altering effects these disorders have on families. The podcast features personal stories, amplifying the voices of individuals navigating the experiences of living with rare neuroimmune disorders. Cyrena Gawuga shares her journey with transverse myelitis, emphasizing the confusion around her diagnosis and the need for integrated medical care. Ireland Thomas, diagnosed with neuromyelitis optica spectrum disorder (NMOSD) since childhood, reveals the intensity of her pain and the challenges of understanding and managing her condition. Doug Kirby, another individual with NMOSD, compares the better-understood NMOSD to multiple sclerosis (MS). Doug stresses the importance of avoiding relapses to prevent decline and shares his emotional journey through pain and loss of control over his body. Megan Willis-Beikman shares her experience as a parent with a daughter diagnosed with MOG antibody disease. The family grappled with uncertainty surrounding the relatively new diagnosis. The podcast episode serves as a bridge between clinical understanding and the lived experiences of those facing rare neuroimmune disorders. It calls for increased awareness, empathy, and support for individuals and their families navigating the uncharted waters of these conditions. As the voices in the episode echo, life with a rare neuroimmune disorder involves not just medical challenges but a profound emotional journey. Mental health professionals will find this episode invaluable for gaining insights into the holistic care required for individuals with rare neuroimmune disorders, allowing them to offer comprehensive support and tailored guidance to enhance their patients’ quality of life. You can find the full podcast episode here. Coming Soon: Listen to the 3rd episode early by visiting: https://findempathy.com/rare-neuroimmune/.
