Idiopathic Intercranial Hypertnsion with Stephanie From Maryland Artwork

Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

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Rare Connection

Idiopathic Intercranial Hypertnsion with Stephanie From Maryland

July 16, 2025 • Joanna • Season 5 • Episode 6

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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:

What it’s like to live with Idiopathic Intracranial Hypertension (IIH)
The role of GLP-1 medications in off-label treatment of IIH
The fight to get off-label treatments covered by insurance
How art and advocacy helped Stephanie regain purpose
Ways to get involved in the Rare Artist Program and Rare Disease Scholarship

🔗 Links & Resources:

EveryLife Foundation: https://everylifefoundation.org
Rare Artist Program: https://rareartist.org
Rare Disease Scholarship: https://everylifefoundation.org/rare-scholarship
More on GLP-1 drugs and IIH: https://pmc.ncbi.nlm.nih.gov/articles/PMC10151178/

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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

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