About USA IIH

Hello and Welcome to USA IIH! I created this space to arm you -the patients, family, and friends of those with IIH – with the latest information about research updates regarding IIH. Currently, we will provide a minimum of two blog posts a year, one after the North American Neuro-Ophthalmology (NANOS) research meeting in March, and the other six months later in September.

These scientific updates will cover topics such as:

1. The clinical trial on Ozempic – is this the future treatment for IIH?
2. Insights into patients with fulminant IIH (a rare presentation of IIH which is associated with rapid vision loss over several days).
3. The likelihood of having a relapse of IIH.
4. Risk factors for vision loss with IIH.
5. Management of IIH during pregnancy.

Already we know that IIH is more common than we initially realized and is increasing in prevalence within the United States. Within the USA this disproportionately impacts our minority women including Black and Hispanic/Latina women.

(check out the entire article here: IIH Prevalence Article

You, the patients and loved ones with IIH, deserve to have these new research developments presented to you in an easy-to-understand way.

About Me:

My name is Jacqueline Shaia and I am a clinical translational scientist aimed at devoting my career to serving the IIH community and other understudied neurological conditions. Having been diagnosed with IIH myself, I understand the pain, anxiety, and frustrating many of us face. Because of my experience, I am determined to improve the lives of all of us with IIH.  

Disclaimer: This website does not provide medical advice.  It is meant to be informative to IIH patients, their families, friends, and caretakers.  Jacqueline Shaia is not a clinician but a scientist whose research and activities are meant to provide information to the scientific community, the community of caretaker, the public, and to those who suffer from IIH.