Liz Formby MBE, a retired civil servant celebrated in the Queen’s Birthday Honours of 2015 for her contributions to educational programs, has also endured a three-decade-long battle with Idiopathic Intracranial Hypertension (IIH).

In response to her experiences, Liz has collaborated extensively with researchers from the University of Birmingham and University Hospitals Birmingham NHS Trust, aiming to discover effective treatments for IIH.

She expressed, “Any advancement that aids in informing others and mitigating the severe impacts of IIH is immensely valuable for those affected by the condition.”

Liz emphasized the importance of heightened awareness across the medical field, stating, “It is crucial for healthcare professionals to better recognize and understand IIH to provide necessary and timely assistance to patients.”

She added, “The insights gained from this research could lead to more dignified and efficient care for individuals suffering from IIH.”

Reflecting on her own diagnosis three decades ago, Liz recounted a particular instance when, en route to visit her brother in Wales, she was overcome by intense headaches, leaving 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.”