Retired civil servant Liz Formby MBE was recognised in the Queen’s Birthday Honours in 2015 for her career supporting education programmes – but has also spent 30 years suffering Idiopathic Intracranial Hypertension (IIH).
Liz has been working with researchers at the University of Birmingham and University Hospitals Birmingham NHS Trust for years in an effort to find treatments for IIH following her personal experience.
She said: « Anything that can help both inform and help reduce the debilitating outcome of having IIH will be so worthwhile for the person with it.
« It is also vital that those across the medical spectrum understand more about IIH and can recognise it, to get the help that is needed for the patient.
« Hopefully, with new research and knowledge gained from this trial, help can be given with dignity and more efficiently to those with IIH. »
Recalling her diagnosis 30 years ago she explained how one week she was driving to Wales to meet her brother and his family when her headaches left her feeling « lost » and « shaking ».
She added: « I eventually made it to the cottage and my family was shocked to see me sweating and clearly not well. But on returning to work, I realised I was struggling to see the computer screens in front of me.
« After another terrible car journey, I went to my local optician to speak to them. They carried out a field test and some other tests, then sent me directly to the hospital.
« I was kept in hospital as they initially thought I had a brain tumour, but I was diagnosed with IHH. »
Since her diagnosis, Liz has pursued an active and rewarding life – albeit with some activities she needs to avoid: « I learnt to not put myself in a position where I felt unsafe with moving lights, or things moving around me. I could not cope with going into a cinema, or into a room that had lights moving around, like a disco, concerts and gigs. In a loud family setting with lots of people around, I would remove myself from the group and go and sit in a quieter area. »
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