Anyone with IIH?



I'm trying to see if I can find any other deaf people that also has IIH (Idiopathic Intracranial Hypertension).

It is a RARE brain disease/condition. It puts a lot of pressure on the brain and pretty much is like having a tumor in the brain, but there is NO brain. The pressure is there for no reason (hence the word Idiopathic.. it means "of unknown origins).

I've been feeling like I'm the only deaf person with IIH, and Im really hoping I'm not. I want to find other deaf people with IIH and find their experiences and history with IIH. Im worried I'm going to permanently lose my eyesight when the pressure gets too much, and I wanted to talk with them about that.

if you have it yourself, or know anyone with IIH, PLEASE let me know!!

Thank you so much!!