I only became aware of other people with IIH, by contacting ASBAH, and the internet back in 2001, and by then after 12 years of medication and lumbar punctures, I had my first LP shunt and found myself registered partially sighted. As time has gone on my main desire has been to help other sufferers so they wouldn't have the kind of experience I had.

I know how important it is not just to have someone to talk to about the illness, but someone who you can feel comfortable talking to, who completely empathises with you, and gives you solid practical advice based on experiences, pointing you in all the right directions. Above all making you feel confident and positive.

We are called I Have IIH, because it is a positive statement, IIH is not something we should apologise for or have to justify. We shouldn't feel embarrassed, ashamed or even feel bad that we have this condition, because this condition could affect anyone, just like any other disease or condition.

We Guarantee

1. We will treat you all as individuals with individual needs.

2. We will try to reply to your posts as soon as we can.

3. We will treat you all with respect and understanding at all times.

4. We will ensure that any information provided is from reputable sources.

5. We will help you to develop strategies that will help give you a better IIH life.