Having IdiopathicThe term idiopathic is used when there is no detectable reason for something. Intracranial Hypertension (IIH) creates a very complex and challenging medical journey compared to those who have more common diagnoses. The rarity of IIH can pose challenges when navigating through the healthcare system to find the right provider and the right treatment. No two people are alike and no two people with IIH will have the same experience.
With the help of the IIH community, we have created a Patient Journey webpage to help decipher the medical world.
On this page we hope to help you every step of the way by providing advice and resources. A fellow IIH member, Nicole @KindlyCollab has added a template that she uses to keep herself organized and efficient when seeing her medical team.
Our Patient Journey page can be utilized at any point in your medical care, whether you have not yet been diagnosed with IIH, are still seeking the right provider, or learning ways to advocate for yourself.
We hope to continue to develop this page as we continue to grow our provider list and as new information arises from the education and research of IIH. If you feel like you can add to this page or provider list, please feel free to contact us. Together we are better.
