IIH UK Christmas cards available now!
Why not visit the IIH UK shop to purchase your charity Christmas cards and pick up a few stocking fillers too! http://www.iihukshop.moonfruit.com/xmas/4580521581
The Daily Mail corrected the inaccurate article that was published earlier in the year regarding 'A lady drinking her own brain fluid'. The correction is here on the Daily Mail's website http://www.dailymail.co.uk/home/article-2347074/Clarifications-corrections.html
Child to Adult transition services - what do you think?
We are looking for people to help with a survey about child-adult transition services. We have been told by many teens and parents that the transition was difficult and little information was given during the process. If you could help please email
and ask for a survey to be sent to you. Thank you.
The Daily Telegraph kindly printed an article correcting the facts of a recent article stating a woman with IIH drank her own brain fluid. The article was publish on 7th June 2013.
The IIH UK AGM and conference
The AGM and Conference held at the Royal Bath Hotel Bournemouth on the 1st June were a great success. More pictures and news to follow!
IIH UK Sarah Hibberd Conference details
The IIH UK Sarah Hibberd conferece details are out now! IIH UK held three conferences with medical personnel from some of the leading University Hospitals in the UK.
The full details of the outcomes of those conferences can be found here:
IIH UK Sarah Hibberd Conference News
THE NOTTINGHAM CONFERENCE
On the 16th January 2013 - IIH UK held a Paediatric Mini-conference at the Post Graduate Medical Centre at Nottingham University Hospital.
Doctors from England and Wales and the IIH UK Trustees gave presentations on a range of medical aspects of care for children with IIH.
The conference agreed to form a research group to be linked to the major research project being planned for IIH investigations. A Consultant Paediatrician from Addenbrooke's Hospital was selected to lead the research group.
Subjects covered during the conference were:
Opening pressures for CSF lumbar punctures in children
The use of drugs to reduce pressure
The care pathway for children
Parental information leaflets for IIH
Guidelines for children's lumbar punctures
Implications of certain types of drugs for women considering pregnancy
The mechanics of CSF outflow in the head and spine
The physics of CSF flow through particular membranes and the electrical/ionic requirements
CSF infusion studies
The Trustees felt that the conference was very successful and very helpful in setting the agenda for children's research within the major research project about to be planned on 6th February.
Doctors were very positive and could not be more helpful.
There were no negative aspects to the conference so we are truly delighted that this conference was so worthwhile.
The main IIH UK Sarah Hibberd Conference will be based on the desperate need for front end research in to the causes of IIH, possible new treatments as well as research in to how current treatments and patient care can be improved.
If you are a Dr or Consultant working in the UK with an interest in IIH and would like to be involved with the IIH UK conferences, please contact us. Thank you.
Please check back for updates on how the conferences went and what was achieved. Thank you.
In November David Dennis IIH UK Chair talked live to radio stations across the UK about the need for more awareness, research and better treatments for IIH Sufferers.
Some IIH sufferers and carers of sufferers were also interviewed. It was an outstanding success with many many more people joining our Facebook page, getting in touch and visiting our website.
Sarah Hibberd played rugby for Henley Hawks Women’s Rugby Team. Sadly, Sarah passed away in September 2011 after a long battle with IIH and multiple brain surgeries.
Henley Hawks Rugby Club held a series of charity events in April 2012 and again on Saturday 20th October 2012, including men’s and women’s rugby matches and children’s practices, a charity lunch and bucket collection, raising £3,600.00 for IIH UK. A further £500.00 has also been donated by a corporate sponsor.
So what happened to the money?
The money paid for a truly remarkable 'Sarah Hibberd Medical Conference' which is transforming the way that IIH is dealt with in the UK. The first Sarah Hibberd Conference was held at Cambridge University in June 2012 and was attended by some of the UK’s leading neurosurgeons,neuro-ophthalmologists, brain scientists, sociologists and paediatric consultants. Led by IIH UK Patron, Professor John Pickard, Professor of Neurosurgery at Cambridge University and Addenbrooke’s Hospital, they made a five year plan for improvement in the way that IIH is treated nationally. This has included:
- Fully funded patient registration to commence in May 2013
- Reappraisal of the way lumbar punctures are used to gather cerebrospinal fluid pressure
- Protein studies seeking the links between obesity and IIH
- Genetic studies in adults and children with IIH
- Re-evaluation of ophthalmological methods of reducing papilloedema (swelling of the optic discs)
- Links to Welsh and Scottish Neurosurgery and obesity national planning
- Grouping of consultants into adult and child study groups for the future study of IIH
- Consideration of the links between IIH, food packaging containing Bisphenol A, and child obesity
- Evaluation of the problems parents face when they have to deal with a very ill child – and how the other children in the family feel about it.
So Sarah’s legacy has done a massive amount of good. All those who donated can be proud of their gift because it has helped so many people – and the work continues.
Sarah’s Just Giving page – organised by her family can be found here: http://www.justgiving.com/Sarah-Hibberd
Important announcement to all those people who are entitled to claim UK disability benefits and who have been diagnosed with IIH – Idiopathic Intracranial Hypertension.
DISABILITY BENEFIT – SPECIAL NOTE FOR IIH PATIENTS
We have found that a number of people have been turned down for disability benefits because DWP and/or contracted medical organisations have misunderstood the word ‘hypertension’ as... referring to high blood pressure and not high cerebrospinal fluid pressure.
The Department for Work and Pensions have now rectified their omission and apologised to the Chair of IIH UK - and IIH is listed on the DWP internal list this week and will appear on the public list next week.
The DWP office responsible for listing diseases has asked IIH UK to tell all of those who have been turned down for disability benefits on whatever grounds to re-apply for benefits.
Find the letter from DWP office saying you could NOT have the benefit and write to the address on that letter as follows:
I was previously turned down for disability benefits because the Idiopathic Intracranial Hypertension that I suffer from was not listed by DWP. This omission has been rectified and DWP has asked me to re-apply.
My symptoms are: (List symptoms)
I understand my application will now judged strictly on the basis of the medical evidence of the effect on me physically and mentally of Idiopathic Intracranial Hypertension.
Sign and print your name.
If you require any further information regarding this note - please contact us.
Scottish Charity Registration
IIH UK are proud to announce that as of 17th July 2012 the Charity is officially Registered in Scotland! Our Scottish registration number is SC043294.
IIH UK Shop
Our online Merchandise shop has lots of goodies for all. Beautifully handmade Kerrisma Jewellery made specifically for IIH UK as well as IH Awareness wristbands, handy key-rings, t-shirts and much more. To order via post please use the contact form to request an order form.
Click HERE to go to our shop.
Don’t forget… IIH UK Members receive 25% discount on all shop orders! Just send your order via the contact form on the shop website and we will invoice you with the discounted amount
We would like people suffering with IIH and those who care for them to meet up face to face in a relaxed social setting. We had the idea of asking people in our Facebook group if they would like to organise a social gathering in their area and we have had a wonderful response so far.
We are now in the process of setting up a register for those interested in meeting up, so we can put you in touch with each other.
If you would like to be on the contact register please email
or write to us at IIH UK, PO Box 382, Burgess Hill, RH15 5DA.
IIH UK 20 Week Weight Loss Challenge
The new challenge started on the 2nd July! Registration is still open, so now is your chance to register, lose weight, raise funds and IIH awareness. We have 27 people taking part so far and would welcome more participants. All details for registration and the challenge can be found on the challenge website www.iihukwlchallenge.moonfruit.com
Olympic Torch Bearer
Katie Williamson is an IIH sufferer and an IIH UK Youth Representative. Katie will be carrying the Olympic Torch through Sunderalnd on the 16th June starting at approximately 9.56am. If you can be there to give your encouragement please do.
Coming up in 2012
27th June 2012
IIH UK held the first Sarah Hibberd Conference in Cambridge. The conference was attended by UK Doctors and Consultants who have a specific interest in IIH, its treatments and finding causes that could lead to possible cures. This conference was a huge success and the next conference will be held in February 2013 in Birmingham.
If you are a Doctor or Consultant who is interested in IIH and you would like to attend the next conference, please contact us for further details.
2nd July 2012
Our new Weight Loss challenge began! The challenge is open to all IIH sufferers as well as their friends and family. The challenge will run for 20 weeks and those taking part are welcome to be sponsored for their weight loss with funds donated to IIH UK.
The emphasis of this challenge is on weight loss and supporting those who feel they would like to join in. We can offer you support via email or through our Facebook group. Full details can be found on the website here.