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Idiopathic Intracranial Hypertension Awareness Month

Join us in September to bring attention to this disabling neurological condition that affects over 1 in every 50,000 people globally.

September is Idiopathic Intracranial Hypertension (IIH) Awareness month. This month is dedicated to bringing attention to this disabling neurological condition that affects over 1 in every 50,000 people globally.

Awareness for IIH promotes research, essential to discovering how this condition originates and look for a potential cure. With more information, providers are better educated to diagnose and treat those who suffer from this disease. Awareness also helps the community better understand that illness may not be seen physically and to treat everyone with respect.

Since we launched our website just a little over a year ago, we have learned so much from the IIH community. We found people who experience this disorder from all over the world including India, Australia, Great Britain, and all over the United States. Each person we met was kind enough to share their story.

Since we launched our website just a little over a year ago, we have learned so much from the IIH community. We have met so many strong and inspirational people along the way. We connected with creatives like Ashley who is a fashionista and Kavya who advocates for those with disabilities.

We were inspired by creatives like Ashley who is a fashionista and Kavya who advocates for those with disabilities. So many women work through their symptoms to continue their careers and relationships like Kiki. They push through the chronic and disabling headaches, adhere to the treatment plan, and stay informed like Alicia. Ashlee even turned her condition into a constructive one by being a positive life mentor. Candace has undergone countless spinal taps, has a VP shunt and shares her medical journey through her social media. Chaniya has a venous sinus stent to help alleviate her symptoms, a fairly new treatment therapy for those who qualify. Morgan is a college student who also creates bracelets to help increase awareness for IIH at her Etsy shop, ChronicCreationsGB.

For the month of September, Rileigh from RileighCreates is offering 15% off anything in her ETSY shop if you use the code IIHHUB.

In recognition of IIH awareness month, we will host a live webinar chat session open for anyone to attend. It will be held on Friday, September 8th at 1pm EST. It will be moderated by Dr. Pierre Gobin, an Interventional Neuroradiologist with over 30 years of experience in the treatment of vascular diseases of the brain, head and neck, and spine. He is a pioneer in endovascular treatment of cerebral aneurysms and has also developed and established minimally invasive surgical approaches to treat acute strokes. 

We would love for everyone to share their experience and meet more of those who have IIH to learn more about their journey. 

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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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