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Take part in our April IIH Community Chat Session as we discuss what it is like to navigate through the healthcare system

Thank you to all who completed our feedback survey that was sent out last month. We learned from your responses that we are on the right track in providing the most up-to-date and evidence-based information on idiopathic intracranial hypertension (IIH). We take your input to heart and learned that our chat session last year was our most attended live webinar to date. Because of this, we would like to host another chat session in the next few months. We would like to discuss what it is like to navigate through the healthcare system. If you have a specific experience you would like to share, give advice or some insight on what it is like to receive medical care with a rare neurological disorder, we would be grateful for your attendance. 

We hope to share with the IIH community your valuable insight on what it is like to speak to your medical doctor about symptoms and the difficulty of going from specialist to specialist to receive a diagnosis. We would also like to discuss what type of procedures and imaging you have received before a diagnosis is made and what type of treatment you are currently undergoing. We have learned that the first onset of symptoms to diagnosis can take months or even years. We also know that it may take several providers and specialists to make the diagnosis and to begin treatment. 

We hope this chat session will help others who are in the process of finding an answer to their symptoms. We hope this live webinar will promote self-advocacy and know that you are not alone. Subscribe to our bi-weekly newsletter to receive updates on our next webinar or follow us on our social media. 

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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