Idiopathic Intercranial Hypertnsion with Stephanie From Maryland

Send us Fan MailIn this episode of Rare Connection, host Joanna speaks with Stephanie from the EveryLife Foundation for Rare Diseases, who shares her journey living with Idiopathic Intracranial Hypertension (IIH)—a rare neurological disorder involving increased pressure around the brain with no detectable cause.Stephanie opens up about the long path to diagnosis, the life-altering symptoms of IIH, and how she eventually accessed treatment through an off-label use of a GLP-1 weight loss drug—a medication not FDA-approved for IIH, but one that is showing promise in reducing spinal fluid pressure in patients. She discusses the immense challenge of navigating insurance to access this treatment and what others might expect if considering a similar path.In addition to sharing her personal health story, Stephanie discusses her powerful work as the program manager of the Rare Artist Program and Rare Disease Scholarship Program at the EveryLife Foundation. These initiatives uplift voices in the rare disease space through creativity and education, offering platforms for patients and caregivers to thrive.🎯 In This Episode:What it’s like to live with Idiopathic Intracranial Hypertension (IIH)The role of GLP-1 medications in off-label treatment of IIHThe fight to get off-label treatments covered by insuranceHow art and advocacy helped Stephanie regain purposeWays to get involved in the Rare Artist Program and Rare Disease Scholarship🔗 Links & Resources:EveryLife Foundation: https://everylifefoundation.orgRare Artist Program: https://rareartist.orgRare Disease Scholarship: https://everylifefoundation.org/rare-scholarshipMore on GLP-1 drugs and IIH: https://pmc.ncbi.nlm.nih.gov/articles/PMC10151178/💬 Join the Conversation:Leave a comment on YouTubeOr send Joanna a text using the link in the show notes!📱 Follow Rare Connection:Facebook: https://www.facebook.com/profile.php?id=100095564621062X (formerly Twitter): https://x.com/Rare_ConnectionLinkedIn: Rare Connection Inc.  🛒 Support the Show:Grab Rare Chef merch: https://www.bonfire.com/invisible-disability-rare-disease-awareness/Or click the Support the Show link in your podcast app📞 Mental Health & Crisis Support: If you're struggling, you are not alone:Call the Suicide & Crisis Lifeline at 988Or text HELLO to 741741 to reach the Crisis Text LineChapter Markers00:00 Intro00:44 Medical disclaimer00:56 Introducing Stephanie01:52 diagnosis story02:33 Right eye goes lazy02:58 Doctor orders MRI03:10 Stephanie passes out03:35 Spinal Tap05:08 Diamox prescribed05:46 Learning to adapt07:50 Stephanie doesn't know when her symptoms started9:10 Undiagnosis09:42 Burden of diagnostic challenge studySupport the show