The reason I started this group, is solely because when first diagnosed in 1989, there wasn't any support groups or internet for me to connect to others with this condition, nor a way to find out any information. All I had to go on was what the doctors told me, and they were the only people I connected to who knew about IIH, or BIH as it was known then. I was a 20 year old with a new baby, a husband and a job, the only thing I could do was learn to cope and adapt by trial and error.

 

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. Heidi Wilson Founder of I Have IIH.