About IIH UK

Over the course of 2019 IIH UK will continue to work to ensure that we become part of a collective voice of organisations that represent neurological conditions. This will enable further awareness and campaigning for improvement for the lives of patients and families affected by IIH. In addition, this will assist in IIH being better understood by the general public and by all professionals with whom IIH patients come into contact. IIH UK are working closely with Prof Alexandra Sinclair the UK's IIH expert and her team of clinicians in Birmingham. 

During 2015 we began the process of setting up a Priority Setting Partnership facilitated by the James Lind Alliance, where we will come together with clinicians and patients to prioritise and determine the Top Ten areas of IIH research that are deemed the most important and need further research, this project is now complete and you can read all about it here.

IIH UK is members of the following organisations:

 Genetic Alliance   Neurological Alliance    James Lind Alliance   Alliance   NCVO   Rare Disease Uk



IIH UK was the ‘brain child’ of Rachel Turner, an IIH sufferer and original owner of the IIH Support Forum. Back in 2004 Rachel and other support forum members realised that although there were other organisations that provided some information on Idiopathic Intracranial Hypertension there was no national organisation dedicated to the needs of sufferers in the UK. So why not set one up?

It took a while to get things moving but after much organisation IIH UK held their first AGM on 17th May 2008 and officially became a Voluntary Organisation. There are just two original team members still volunteering their time; Shelly Williamson and Clare Parr.

It was a step in the right direction. None were especially qualified to run a voluntary organisation and progress was slow. Just a few months later Rachel made the difficult decision to stand down as chair of IIH UK and to close the support forum. The forum at that time was run solely by Rachel and was independent from IIH UK. 

Of course we could not let the support forum close down, Rachel had dedicated so much of her time to it, hundreds of people relied on it and for many IIH sufferers it was the only place where they could come for support. IIH UK took over the day to day running of the Support forum and changed its name to the IIH International Support Forum. We opened our online store giving people the opportunity to buy IIH Awareness Merchandise. www.iihukshop.moonfruit.com and in August 2011 IIH UK become registered with the Charities Commission and with the Office for Scottish Charity Regulators a year later. The support forum closed in 2018, Facebook groups had taken over and no one used it anymore. 

The enthusiastic Team of ever changing volunteers have enabled IIH UK to grow and we are busy providing information, promoting awareness and supporting people with IIH and their families and friends. With this in mind, we have created 14 UK regional support groups on Fb for members to meet up socially. The groups are growing weekly, the largest membership being in the South East with over 575 members *August 2019. Some of the groups meet monthly and have enabled some firm friendships to develop. We also run a support group, weight loss group, mens group and work/study group on Fb. 

With the help of our members and supporters, we are distributing IIH patient information leaflets and posters into hospitals, GP surgeries, opticians, anywhere that will have them, to enable more IIH sufferers to access the information and support we provide. We continue to support people via the support forum and hold our annual ‘Weekenders’ giving people the opportunity to meet other people suffering with IIH.


Prof Alexandra Sinclair is a Consultant Neurologist at Queen Elizabeth Hospital, University Hospital Birmingham NHS Foundation Trust and NIHR Clinician Scientist at the University of Birmingham. Working as a NIHR Clinician Scientist in Neurology with a role combining clinical and research work into IIH and the neuroendocrine aspects of headache, she runs specialist headache services at the Queen Elizabeth Hospital Birmingham and has a specific interest into headaches relating to changes in intracranial pressure. Prof Sinclair wants to evaluate the best ways to treat IIH, evaluate the causes of IIH and gain understanding of the long-term consequences of the condition on health and people’s lives. 

So much is happening. We have come a long way since our formation in 2008 but we still have a long way to go. Membership of IIH UK has grown steadily year on year and we would like to take this opportunity to thank each and every one of our members and supporters, for without their belief that we could make this work, their fundraising efforts and infectious enthusiasm we wouldn’t be where we are today.

Read about IIH UK's Trustees, volunteers and Patron

Rachels quote

Imagine your head feels as though it's been crushed by a vice, a headache unlike anything you've ever felt before, where every part of your head hurts and the pressure is unbearable, and it's a pain no-one can see.

Imagine a world in permanent soft focus, where things come in twos, where things disappear momentarily, where you can't tell how deep a step is, where bright light is a pain you can't stand.

Imagine a world that sways around you, where you feel as though you're in the middle of a storm on a cross channel ferry, feeling dizzy and sick - yet you're standing still.

Imagine you're so totally exhausted that your body doesn't want to move and all you want to do is sleep, yet an incessant roaring in your ears keeps you awake.

Imagine feeling lost and fearful, confused in a place you used to know well.

Welcome to the world of IIH!

©Copyright 2003 – 2018 Rachel Turner IIH UK


IIH UK is members of the following organisations.

  Genetic Alliance Logo    Neurological Alliance Logo     JLA Logo    Alliance    ;NCVO Logo    RDD Logo