About Us

Shelly Williamson - Chair

My daughter was diagnosed with IIH in 2007 at the age of 13. At that time, I was working as an Ofsted Registered Childminder, working with Sunderland Social Services, offering respite care. It soon became apparent that I could no longer do this whilst caring for a child with a chronic illness, so I had to give it up.

When my daughter was diagnosed with IIH, I asked the consultant for information about IIH and was told there is none and to google it when I got home. I did just that and found the former IIH Support forum where I volunteered and became a moderator. Soon after, I was invited to join the team and was instrumental in getting the IIH UK Charity off the ground. First as Treasurer, then Secretary and I now hold the position of Chair. I have spent the last 13 years working as a volunteer for IIH UK. During this time I have taken an active role in supporting others with IIH, attending conferences and taking an active part in the charity's activities

Clare Parr - Liaison Representative and Trustee

I was diagnosed with IIH in 2005 and found a small UK-based support forum created by a nurse whose Mum had IIH. This was invaluable for me, as so much was unknown. I found support and friends for life. A small group of us felt we needed more support and focus on IIH in the UK. By 2008, IIH UK had its first conference and AGM.

Amanda Denton - Research Representative and Trustee

I was diagnosed with IIH in 2014 and found the lack of information and awareness was a barrier to mine and my families learning to live with this condition. I was a lecturer in Physiotherapy at Plymouth University and lead a MSc in Neurological Rehabilitation. I am a Trustee and Research Rep for IIH UK.

Betsy Clarke - Treasurer and Trustee

My name is Betsy Clarke, and I joined the IIH UK Team when my daughter Hollie (who is a secondary school maths teacher) was diagnosed with IIH in 2018. I wanted to help raise awareness and support for this terribly under-mentioned and under-funded condition. I began volunteering as Accounts Representative at the 2019 AGM and am now Treasurer.

Kerryann (Kerry) Chalmers-Worth - Secretary and Trustee

I'm a mum and wife living in Sheffield. My IIH journey started after the birth of my eldest son, getting a diagnosis, took over a couple of years of blurry vision, and extreme headaches, getting diagnosed in 2004. I went into occular remission after the birth of my youngest son in 2011. Only after some extremely fast weight loss did paps recur, I am thankfully again in ocular remission: all the other symptoms remain. When I was originally diagnosed, like many others, I was lost, and the hospital gave me absolutely no real information. I was relieved to find a support forum, which was very helpful and is the platform from which this amazing charity was formed. I feel honoured to be able to give something back to the charity that has been such a source of information and support throughout my whole journey. I am also a facilitator for the wonderful Hope program that IIH UK funds for its members. I was a participant myself when it was launched, and I found so much benefit from it. I look forward to chatting with some of you there.

Nisha Sedani - Research Representative

Hello, my name is Nisha and I am a Research Representative at IIH UK. I suffered from IIH as a young adult and it was during this time that I was extremely frustrated at not being able to express my overwhelming pain, frustration and confusion. By joining the team at IIH UK, I feel that I am able to bring my experience to enable us to gain a better understanding of the causes and treatments for IIH. I am excited to be part of the team at IIH UK, working together to enable further awareness and campaigning for improvement for the lives of patients and families affected by IIH.

Katie Williamson - Shop Representative

Hi, I’m Katie, and I was diagnosed with IIH in 2007 when I was 13. I was quite poorly the first 6 years or so after my diagnosis, but have now been fairly stable since 2016. I run the shop here at IIH UK.

I am autistic with PDA and as well as IIH, I also have epilepsy, asthma and IBS. I don’t let my illnesses rule my life though and love to ride horses. I ride at my local RDA centre, and dressage is my passion.

Mellissa Fisher - Arts and Culture Representative

Hi I'm Mellissa! Here's a little about me and my art practice:

Mellissa Monsoon is a British artist known for her fascinating interdisciplinary work that blends art and science. Her practice often delves into the intricate connections between nature and the self, exploring themes from the microscopic world on our skin to the complexities of invisible illnesses. A 2016 graduate of the MA Art and Science course at Central Saint Martins, Monsoon's past projects include creating casts of her own body and the bacteria living on it to visualise this unseen realm. Her compelling work has led to major commissions, including a large-scale microbial sculpture for the BBC documentary "Michael Mosley vs the Superbugs," which aired internationally. She has extensive experience collaborating with scientists and leading participatory workshops that bridge art and science. Monsoon's recent work focuses on invisible illnesses, particularly Idiopathic Intracranial Hypertension (IIH). Through her art, she explores not only the scientific aspects of IIH but also the profound impact it can have on body image, offering a unique and personal perspective on living with the condition. Works from exhibitions Sense of Symptoms, Sense of Stigma and The Joy of Fat talk about IIH and the role of medical stigma. 

website: www.mmonsoon.com instagram: @mellissamonsoonartist