When you’re first diagnosed with IH, it seems you’re the only person who has this rare disease. No one you speak to has ever even HEARD of it, and it’s unlikely you’ll know someone who has it.

Due to privacy laws in Australia, it is illegal for your doctors to give you the name of another patient to talk to.

As IH is so rare, there aren’t even foundations, like those for heart disease or diabetes, that you can turn to.

This site was created in an effort to make your journey after diagnosis a little easier. We can provide you with information, support and someone to talk to who knows what you’re going through.

This website offers a lot of ways to contact other people living with IH:

Join our mailing list and have email access to a whole group of people. This is a wonderful resource if you have a particular question. If you post it to the group, you’ll usually get several points of view and experiences.

It is also a great way to build friendships and get to know others. Many of the group also get in touch by ‘phone and support each other through Lumbar Punctures, Doctor visits, and surgeries.

Or you could also post a message in our forums. These notice boards are also great for asking questions, saying hello and meeting other IHer’s. The more they are used, the more valuable they will be to help support each other.

A third way to access support is by joining our database. This is a voluntary state-by-state listing of people with IH.

It is hoped that people will be able to find others in their area. This may lead to “real life” meetings, or maybe even a state get-together.

Support, friendship, advice and information are all available to you here. Get involved, ask questions, get to know us and we’ll help you through this together.

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This page last updated 12/9/2003
Created by Julia S. without a tress!