In 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:
🔗 Links & Resources:
💬 Join the Conversation:
📱 Follow Rare Connection:
🛒 Support the Show:
📞 Mental Health & Crisis Support:
If you're struggling, you are not alone:
Chapter Markers
00:00 Intro
00:44 Medical disclaimer
00:56 Introducing Stephanie
01:52 diagnosis story
02:33 Right eye goes lazy
02:58 Doctor orders MRI
03:10 Stephanie passes out
03:35 Spinal Tap
05:08 Diamox prescribed
05:46 Learn
