IIH UK Medical Advisors and Trustees About IIH UK

IIH UK Patron

We are proud to announce that our Patron is Professor John Pickard, Professor of Neurosurgery MChir, FRCS, FRCSEd, FMedSci at Cambridge University and Addenbrookes Hospital. He is also the Director of the Wolfson Brain Imaging centre. He has been and is the most supportive Patron we could wish for and he is currently working on the NICE guidelines for IIH.

His work also involves novel treatments for Idiopathic Intracranial Hypertension (IIH), advancing the care of patients with acute brain injury (trauma, haemorrhage and hydrocephalus) from initial ictus, neurointensive care, recovery from coma and rehabilitation to final outcome through the study of pathophysiology (multimodality bedside monitoring, PET and MR imaging - Wolfson Brain Imaging Centre), randomised controlled trials, UK Shunt Evaluation Laboratory and Shunt Registry.

His own and his team’s discoveries have included definition of how early insults to the brain in both childhood and later life may lead to late changes and cognitive outcome, new ways of detecting when the blood supply to critical areas of the brain become at risk, which treatments may be helpful (acute statin, decompressive craniectomy) and which counterproductive, detection of awareness in the 'vegetative ' state (fMR), which parts of the brain are affected in normal pressure hydrocephalus. He uses the following major medical tools: Computational modelling. Magnetic resonance imaging (MRI). Multimodality bedside monitoring (microdialysis, intracranial pressure, transcranial Doppler), Positron Emission Tomography (PET).

Working with IIH UK

Dr Alexandra Sinclair MBChB (Hons) MRCP PhD the NIHR Clinician Scientist in Neurology and Honorary Neurology Consultant at University of Birmingham and University Hospitals Birmingham NHS Foundation Trust. Dr Sinclair specialises in front-end research looking at the cause of IIH in relation to obesity and female hormones and obesity enzyme abnormalities (11 beta Hydroxysteroid dehydrogenase metabolism). She is also looking at effects and methods of treating obesity to treat IIH. Dr Sinclair will be a vital member of our conference and planning programme as she is almost uniquely involved in a series of critical UK research programmes to remove the term ‘Idiopathic’ (or of unknown cause) from the name of this terrible condition.

Dr Ming Lim – MRCP PhD is a Paediatric Neurologist at the Evelina Children's Hospital, Kings Health Partners Academic Health Science Centres. He has a clinical interest in paediatric IIH and looks after a large cohort of young children with this condition. He collaborates with scientists who are currently working on non invasive tools to measure CSF pressure. He will contribute to the working party for the IIH research, by drawing on his clinical experience in this field.

Dr Gabriel Chow – BSc(Hons), DCH, MBBChir, MD, FRCPCH, MBA(Open), BA(Open) is a Paediatric Neurologist at Nottingham Children’s Hospital, Queens Medical Centre Campus, Nottingham. She has a clinical interest in paediatric IIH, and is working with colleagues to create a possible care pathway for this condition.

IIH UK work with a team of 22 Consultant Neurologists, Neruosurgeons, Neuro-Ophthalmologists, Neuro Radilologists, Clinical Scientists, Brain Physicists and Clinical Specialist Nurses at leading hospitals throughout the UK. For more details please contact us.

David Dennis is a retired RAF officer who has also been a government inspector of learning.

David says: Having achieved National Charity status in both England and Scotland, we have worked hard as Trustees for 18 months to raise the profile of IIH UK and build an outstanding medical advisory team.

This team of neurologists, neurosurgeons, neuro-ophthalmologists, paediatricians, nurses and scientists is now developing extensive research programmes into the causes of IIH, but also to ensure that all patients with IIH are formally registered.

Our research conference programme - called the IIH UK Sarah Hibberd Conferences in memory of the daughter of Elaine Phillpot, has now been completed.

Research has begun into the chemistry involved in IIH, the effectiveness of shunts, guidelines and best practice for IIH patients which will ensure that all those in the UK with IIH receive the same high standard of treatment. We also continue to liaise with the USA’s space agency NASA via their Human Health Programme.

No significant progress has been made towards finding a cause for IIH in over 100 years - until now.

We and our medical advisors have the greatest possible chance of helping to solve the mystery of this alarming condition which causes so much illness, stress and unhappiness to those with IIH.

As our Patron, Professor John Pickard said during the IIH UK research conference in Birmingham on 6th Febraury 2013: 'The time for IIH has come'!

Natalie Garrett is Trustee and Secretary for IIH UK and daughter of David Dennis – IIH UK Chair. Natalie worked for many years as a medical secretary in the private health industry. Her daughter Lana-Mae, 10 years was diagnosed with IIH at the age of 5 ½ . Natalie joined the IIH Support Forum after being told by her daughters diagnosing hospital that they knew very little about the condition. She worked with IIH UK as well as the IIH Support Forum as Fundraising Officer and became Secretary for IIH UK in May 2011.

Michelle Williamson is Treasurer and Trustee. Michelle worked for many years as a secretary. She then became a self-employed Ofsted registered child minder and worked with Social Services giving respite care for children with special needs. Michelle’s daughter Katie was diagnosed with IIH at the age 13 in 2007. Michelle has worked with the IIH Support Forum and IIH UK since then. Her daughter Katie is an IIH UK Youth representative.

Sandra Doughty is a Trustee and Fundraising Officer. Sandra works part-time as a Civil Servant in the Ministry of Defence. Sandra was diagnosed with IIH in 2011 after a period of sight problems but had been experiencing severe headaches since 2008. Sandra acts as a Moderator on the IIH Support Forum and has been undertaking the Fundraising Officer role since attending the 2012 IIH UK AGM.

Also working with IIH UK - NASA Liaison Information

We have been in touch for several months now with the Astronaut Medical programme Director (Jennifer Fogarty PhD) at NASA Johnson Space Centre in USA and the NASA Human Health and Performance Center about our work. NASA have astronauts who are suffering eye problems and hallucination and other IIH-like symptoms. This is making planning for the Mars mission due in 2030 more difficult since it has raised the medical risk level. NASA medical officers and scientist have been to the UK and have liaised with one of our medical advisors, Dr Lim Ming of the Evelina Children’s Hospital.

Our concerns about such drugs as Acetozolamide, Topiramate, Indomethicin, Furosemide, Bumetanide and Angiotensin converting enzyme inhibitors have already been passed to NASA HHPC of which we are a member. Another critical aspect for astronauts is ‘gravitational pooling’ in which the CSF (cerebro-spinal fluid) ‘sits’ in a lump and depresses the brain even though it is supposed to be flowing liquid as it becomes trapped between membranes covering the brain. NASA have been invited to send a representative to the first Sarah Hibberd Conference.