I started this blog as a way to bring awareness to a rare disease with two different long, hard to pronounce names: Idiopathic Intracranial Hypertension (say that 3 times fast). It's also known as Pseudo Tumor Cerebri although doctors are wanting to retire this moniker. Me? I just call it my fake tumor. More on that later.
In order to educate about this disease I'm going to be sharing my own journey with IIH/PTC as well as the few research studies I can find. I also hope to have some guest posts from other people who have the condition. My own story will be told in a series of several posts and will continue indefinitely since I still deal with this condition on a daily basis.
My reasons for bringing awareness to IIH are two-fold:
Although IIH/PTC is rare, affecting only 1 in every 100,000 I hope that someday I will meet someone who recognizes the name when I mention it instead of looking at me like I'm speaking a foreign language. I want people to understand what it is and what it means when someone they love is diagnosed with Idiopathic Intracranial Hypertension.
IIH is currently incurable. There are treatments available to reduce symptoms but there is no cure. I hope that continued awareness will help bring more funding for research on this life changing condition.
Want to help? Click ---> IIH Awareness
First blog posts are awkward, aren't they? :) Anyway, thanks for reading. I'll be starting with my story soon!
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