September 2022. The annual IIH UK Conference took place on 19th September 2022. The day had a range of speakers presenting on a range of topics outlined below.
February 2022. IIH UK was successful in a grant application to the National Lottery Community Fund to support the development of a Hope programme for adults with IIH. Work on this project has now commenced with three co-productions sessions held in November 2021. The co-production sessions were attended by people with IIH and a separate session was held for professionals from a variety of backgrounds. These sessions looked at what elements a self-management programme should focus on. These sessions are currently being transcribed and the Hope Project will be sharing the outcomes of these with IIH UK soon. Work can then begin on building a bespoke self-management course for people with IIH. Keep an eye on the website and social media channels for updates.
February 2022. IIH UK has partnered with Hope for the Community to offer new self-management programmes for people with IIH and parents of children with IIH. The first course for parents of children with IIH has now completed and 23 parents signed up. We are putting together the feedback from this and will update you in the next newsletter. IIH UK will be setting new dates for this course soon, so keep an eye on the IIH UK website and on our social media channels if you are interested in joining.
15th July 2021. We're excited to tell you that we have secured a grant from The National Lottery Community Fund@TNLComFund to run the HOPE programme. Our HOPE project will create a virtual support community for people with IIH around the UK. We will tell you more about it soon!
9th June 2021. This important paper was published today. Headache attributed to idiopathic intracranial hypertension and persistent post-idiopathic intracranial hypertension headache: A narrative review - https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.14125
8th July 2021. Research from Germany was published today. The patients’ perspective on the burden of idiopathic intracranial hypertension. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-021-01283-x
4th May 2021. We have teamed up with Nick Hardman at http://facebook.com/3dtoyshop who has made his Teddy shunt valve in IIH colours exclusively for IIH UK.
26th April 2021. Help us inform doctors on obesity stigma that those with IIH experience. This survey is for adults with a diagnosis of IIH (over the age of 18) who have been advised to lose weight by health care professionals involved in their care. https://surveymonkey.co.uk/r/6GBBQHT
Such important emerging work for IIH from the Birmingham team. Bariatric surgery is superior at lowering ICP and sustaining disease remission in Idiopathic Intracranial Hypertension. https://jamanetwork.com/journals/jamaneurology/fullarticle/2778650
16th April 2021. Breaking news!! Distinct transcriptional profile in IIH adipose tissue Right pointing backhand index metabolic underpinnings in IIH. https://insight.jci.org/articles/view/145346
30th March 2021. A new Birmingham-led clinical trial has launched to determine the best vision-saving treatment for patients with idiopathic intracranial hypertension (#IIH), a debilitating condition which causes regular disabling headaches and can lead to blindness. https://www.birminghamhealthpartners.co.uk/trial-aims-to-prevent-blindness-in-patients-with-neurological-condition-iih/
Cost-effectiveness of bariatric surgery versus community weight management to treat obesity-related idiopathic intracranial hypertension: evidence from a single-payer healthcare system https://www.soard.org/article/S1550-7289(21)00155-6/fulltext
28th February 2021. Today is RareDiseaseDay! IIH is just one of over 6000 rare diseases! 300 million people live with a rare disease across the world and Rare diseases currently affect 3.5% - 5.9% of the worldwide population. Learn more about what is a #raredisease https://www.rarediseaseday.org/article/what-is-a-rare-disease
2nd February 2021. Our first Webinar went extremely well this morning and is now on our YouTube Channel here: https://youtu.be/3XtuVKgo5Z0
20th January 2021. New research from Swansea Uni - Idiopathic intracranial hypertension is on the rise - https://www.news-medical.net/news/20210120/Idiopathic-intracranial-hypertension-is-on-the-rise-finds-study.aspx
8th January 2021. Use of Telemetric ICP monitoring in #IIH is growing driving improved care of complex cases and important insights into physiology. https://link.springer.com/article/10.1007/s00701-020-04640-y
26th December 2020. Great to get this message out. The first lockdown negatively impacted #IIH patients. An excellent post Christmas read. https://jnnp.bmj.com/content/92/7/795
16th December 2020. Well done to all the artists who entered our IIH Art Competition. The winner of the child category was 13 year old Ellie Rogerson Rattigan and Alister McCracken was the winner of the adult category. A HUGE Congratulations to you both!
14th December 2020. CGRP Monoclonal treat headaches in idiopathic intracranial hypertension once papilloedema has settled : n=54 patients for 12 months Such an important step forward in such a refractory patient group. https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.14026
1st December 2020. New paper published today: New horizons for idiopathic intracranial hypertension: advances and challenges https://academic.oup.com/bmb/article/136/1/118/5983610?guestAccessKey=53afc282-572b-4929-baf8-cae38bd96c94
24th October 2020. Check out this new research - 11βHSD1 Inhibition with AZD4017 Improves Lipid Profiles and Lean Muscle Mass in Idiopathic Intracranial Hypertension. https://academic.oup.com/jcem/article/106/1/174/5938445
OCT imaging of papilledema can predict intracranial pressure in idiopathic intracranial hypertension using optic nerve head volume measures. https://www.birmingham.ac.uk/news/latest/2020/10/optical-imaging-to-measure-swelling-within-the-brain.aspx
We asked people how lockdown has affected them. You can find the report here: Life_in_lockdown_result_summary.pdf (iih.org.uk)
We asked the people we support, "In one sentence explain how IIH headache has impacted/changed your life." This poster was shared at the European Headache Congress 2020 Conference.
New research just published! Emerging themes in idiopathic intracranial hypertension
Calling all clinicians with an interest in paediatric IIH. We have sponsored this Paediatric IIH Virtual Study Day. Follow the link for more details and to register. https://www.eventbrite.co.uk/e/cambridge-paediatric-ptcs-iih-virtual-study-day-tickets-116103295081
Check out Invex Therpeutics, a clinical stage biopharmaceutical company re-purposing Exenatide for the treatment of pressure-related neurological disease, with an advanced clinical program in Idiopathic Intracranial Hypertension (#IIH) and orphan drug designation in the US and Europe. https://invextherapeutics.com/
29th June 2020. There has been an increase in sight threatening IIH. Please read this important message from Miss Mollan and Professor Sinclair. If you have any questions regarding this they can be discussed on our Fb Charity page HERE or Twitter
27th June 2020. Our Life in Lockdown report was launched today. You can read it
15th May 2020. ~ Survey on the sensory experience of IIH ~
People with IIH experience symptoms of headache, tinnitus and visual disturbances. The purpose of this survey is to explore the sensory experience of these symptoms in the words of people with IIH. The results of this survey will be used by artist Mellissa Fisher (Artist in Residence at the University of Birmingham with the Centre for Systems Modelling and Quantitative Biomedicine) who will be visualising the data through sensory installations, raising awareness to the condition as well as understanding through art, science and technology as well as by IIH UK to raise awareness of the condition. The survey should take 5-10 minutes to complete.
If you are over 18 and experience headache/ tinnitus/ visual disturbances with your IIH you can take part via the link below:
Any data submitted through this survey will be anonymous. The survey is open until Fri 29th May.
Any queries please contact
17th March 2020. You can read the COVID-19 announcement
Breaking News! Birmingham researcher awarded £1.68m to fund research in 'raised brain pressure'.
Leading researcher Professor Alexandra Sinclair from the University of Birmingham’s Institute of Metabolism and Systems Research has been awarded £1.68m to fund research into intracranial hypertension (raised brain pressure), and develop a new treatment for Idiopathic Intracranial Hypertension (IIH), a rare condition that causes disabling headaches and can lead to blindness. You can read this exciting news HERE