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Honoring IIH Awareness Month by Sharing Our Journeys

The IIH Community Chat provided an open forum where attendees shared their journey from symptom to diagnosis and their current medical status

In honor of Idiopathic Intracranial Hypertension (IIH) Awareness Month, we dedicated this month’s webinar to spotlight anyone who has IIH. We are so grateful for those who were able to attend our chat session last week and open up about their medical journey. We hosted Ashley Carter who has battled with IIH for the past 3 years and is now well-controlled with Diamox. Dr. Pierre Gobin, a Neurointerventionalist from Weill Cornell in New York moderated the session and answered any medically-related questions. Dr. Brian Snelling, who is a neurosurgeon in South Florida, explained some of the current diagnostic tools and surgical treatment options for IIH.

We held an open forum where the attendees shared their journey from symptom to diagnosis and their current medical status. A handful of people expressed their frustration of finding a medical provider who is compassionate enough to listen to their story and know what IIH is. We were also lucky to have one attendee who is on both sides of the fence as she is a nurse practitioner and suffers from IIH. She described how she advocated for herself to find an appropriate provider who was familiar with IIH to receive appropriate treatment.

IIH Patient Journey Through Diagnosis
Image courtesy of Dr. Visish Srinivasan, Neurosurgeon at Penn Medicine

Ashley shared how grateful it is to have a neurology group in North Carolina who is competent with her condition. She and others shared the name of physicians across the US who our attendees felt they were comfortable in diagnosing and treating IIH. We are in the process of creating a page on our website to feature a provider page for you to access these specialists. We hope to host another chat session in the future.

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Patient stories

“I know everyone says to trust your gut, so I’ll say trust your headache. Your pain is real, and ‘borderline-ish’ does not serve anyone.”
“Knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case.”

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IIH Community Chat

Discussion on navigating through the healthcare system

April 25 at 10am ET