Hi, my name is Kelly and I was diagnosed with IIH in 2006 at the age of 22. I have 3 beautiful children and, whilst it is a daily struggle living with the condition, I have an amazing family that help me.

I have had over 30 lumbar punctures to relieve the pressure and I am on lots of medication which have horrible side effects. I had an OCP monitoring operation in 2014 which led to meningitis as a complication and I now suffer with epilepsy as a result.

Having IIH is a constant battle but the support groups on Facebook are a godsend, in that you can speak to people who understand what you are going through without being a burden to your family. I pray every day for a cure to make life more bearable for me and my children.

IIH UK is members of the following organisations.

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