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IIH Charity Fundraising Ball

Discussion in 'Leeds Events Diary' started by IIHCharityball, Oct 2, 2010.

  1. IIHCharityball

    IIHCharityball New Member

    My name is Amy Johnson, I am from Sheffield. I am a 25year old and I suffer with an agonising, extremally rare, incurable and Debilitating Brain condition called Idiopatic Intercranial Hypertention Or IIH for short!!

    I was diagnosed in april 2008, after contracting Viral and Bacterial Meningitus on the 8th of September 2007- at the time I was a 22yr old single Mum to A beautiful 1 yr old son.

    My world seemed to crumble around me, I was suffering with unbearable headaches, neck stiffness, memory loss and fatigue. I had a brilliant job as a secondary school SEN teacher-Which i loved so very much and trained so hard to do, I lost my job January 2008 as my employer didnt realise how ill I actually was! I instructed a solicitor but to no avail, I was left with wages owing, friendships ruined and sever depression.

    My parents, Sister and son have had to watch me be hospitalised at least 4-5 times a year, My little boy calls the Hallamshire Hospital My other Home! My condition has affected all our lives, my parents are amazing, and juggle looking after my little boy and running a full time business, If it wasn't for them i really don't know what i would do. I also have a wonderful Friendship Group who keep me going and help as much as possible.

    After 30+ Lumber Punctures, over 20 different daily tablets and a pain killer addiction. I was finally placed on a waiting list to have Brain Surgery!! In January 2010 I had a VP Shunt fitted which helps regulate how much pressure is on my brain. I have suffered with various complications since my surgery and i am currently on the waiting list for more surgery!

    I am wanting to raise awareness of my condition, as not many health professionals, friends or family actually know about my condition and the effect it has on my day to day life. IIH affects 1 in 100,000 people. and hopefully I will be able to raise some money toward the IIH fund, Which provides research into the condition.

    In December i am going to be doing a fundraiser ball, this will be a chance for all the UK IIHers to get together and share stories!

    I am needing prizes or donations from local businesses, I will be advertising who donates what.

    I am hoping for a story to be run or maybe Just an article by local papers,radio and TV. I need Anything really to help raise as much awareness as possible.

    Many thanks

    Amy Johnson

    Registered Lottery Number:LR19979

    Idiopathic Intracranial hypertension (IIH) is a serious neurological condition in which high cerebrospinal fluid (CSF) pressure within the skull causes unbearable headaches, swelling of the optic nerves (papilloedema) and can result in loss of vision or blindness. IIH was formerly known as BIH (Benign Intracranial Hypertension) although this name is falling out of use now as the condition can cause permanent visual loss and therefore is certainly not harmless or benign, as sufferers who live with it's effects daily would agree. It's also sometimes known as pseudotumor cerebri (PTC) as there are some of the signs and symptoms of a brain tumour without a tumour being present(pseudo meaning false). The cause of IIH is unknown – idiopathic means "of unknown cause". IIH is a rare condition affecting about one or two in every 100,000 people, most of them women of childbearing age, but men and children can also be affected.
    Diagnosis of IIH is made by identifying the typical symptoms of the disease and ruling out other conditions that can cause the similar symptoms. Neurological examination is normal, except for the presence of swollen optic nerves (papilloedema), although papilloedema may not always be present, and imaging procedures such as CAT/CT scans and MRI scans are normal. Definitive diagnosis of IIH is made by performing a lumbar puncture which shows the pressure of cerebrospinal fluid (CSF) to be above 25cm/H2O.
    What causes IIH?
    No–one knows what causes IIH, although blood clots in the veins draining the brain can cause increased intracranial pressure. Withdrawal of steroids, large doses of vitamin A or intake of foods containing large amounts of vitamin A, use of body building–type steroids and possibly, hormonal changes and certain drugs can also cause raised intracranial pressure. Statistically, the majority of IIH sufferers are "women of childbearing age" who are overweight, which has lead some doctors think IIH is associated with being overweight. Many sufferers find though that losing weight doesn't help their symptoms, but research suggests that a 6% decrease in bodyweight can help to resolve the papillodaema (swelling of the optic nerves) that is associated with the condition.
    Symptoms of IIH
    The most common symptoms of IIH are: severe headache, papilloedema, temporary loss of vision, transient visual obscurations (blurred vision), double vision and decreased visual acuity, pulsatile tinnitus ("whooshing noise" in the ears in time with the pulse), and pain behind the eye and with eye movement.
    Other symptoms reported by people with IIH include: nausea, vomiting, fatigue, photophobia (dislike of and pain caused by bright light), problems with balance and spatial awareness, aphasia (difficulty using or understanding words), disorientation, loss of short-term memory (sometimes also long-term memory loss), confusion, feeling 'spaced out', and lack of depth perception (for example judging the depth of stairs, steps, and curbs can be a problem). People with IIH may find unfamiliar (and even familiar) places, and traffic, confusing and overwhelming.
    Treatment of IIH
    IIH is a complex disorder though, and a number of things have been implicated in IIH, including hormones, certain drugs, and other factors either medical or surgical.
    Medical treatment

    The most commonly prescribed medication is acetazolomide, which is a diuretic. It's thought that it acts by reducing the production of CSF. It's relatively safe but nearly all patients have tingling of the fingers and toes as a side effect of the medication, and patients are advised to increase their intake of potassium as acetazolomide drains the body's stores of potassium. As well as the standard acetazolomide, a sustained release form of the drug is also available, 'Diamox SR', and many patients tolerate this form of the medication better and find that the side-effects are reduced in comparison with the standard form of acetazolomide. Another diuretic commonly used is frusemide. Sometimes a short course of steroids may be given. Various analgesic drugs (painkillers) are used to treat the pain associated with IIH, with varying degrees of success, but as with all painkillers care must be taken as many drugs can be addictive and some can have severe side-effects.
    Some people need repeated regular lumbar punctures (LPs) to remove excess CSF, or if symptoms don't improve on medication, surgical treatments may be considered.
    Surgical treatment
    Surgical treatments for IIH fall into two main types; neurosurgical ophthalmic procedures to relieve pressure on the optic nerve, and neurosurgery to drain excess CSF (cerebrospinal fluid) to reduce the intracranial pressure. Other types of surgery may be performed, but less commonly. Of the two, the reduction of the amount of CSF by surgically implanting a shunt is the most common procedure for IIH.
    If vision is severely affected or threatened, optic nerve sheath fenestration (ONSF) may be considered. In this procedure, the sheath surrounding the optic nerve is slit, or a 'window' cut into the sheath to relieve the pressure on the nerve and allow the CSF to escape. While ONSF is very effective at relieving the pressure on the optic nerves, and thus helping to resolve papilloedema, the amount of CSF which is drained due to this procedure is neglible, and ONSF has little effect on the intracranial pressure overall, or on the other symptoms of IIH. Not all patients are suitable for ONSF surgery though, and in practice, due to the fact that shunting is more effective at reducing the overall intracranial pressure and alleviating symptoms, more commonly shunting is the surgery of choice for IIH.

    There are two main types of shunts that are used, the lumbar–peritoneal shunt (running a tube from the spinal fluid space in the lower spine into the abdominal cavity), and ventriculo-peritoneal shunt (running a tube from the ventricles (fluid filled spaces within the brain) into the abdominal cavity). Again though, not all patients are suitable candidates for shunt surgery. CSF shunts were originally developed to treat hydrocephalus patients, which though it shares some symptoms in common with IIH, is a totally different condition. Hydrocephalus patients usually have normal or large sized ventricles in the brain, whereas in IIH, ventricles are often either small or slit-shaped, and this can make the placement of ventriculo-peritoneal shunts in IIH patients sometimes difficult. Where shunting is used though, often it is very successful in reducing symptoms and reducing the intracranial pressure for many people. Shunt infections, blockage, and over-drainage though can be a problem with shunts, and some patients require frequent revision surgery to their shunt.
    Surgical intervention is usually only used as a last resort though and to protect vision because of the risks involved, i.e. the general risks of surgery and anaesthetics, infection, blockage, and over-drainage. Even when CSF pressure is successfully reduced by drugs, or by surgical intervention, though, some symptoms, including severe headaches can still occur. The reasons for this are not fully understood, and despite controlling intracranial pressure, symptoms of IIH can still be very disabling for some IIH patients.
    While for some patients their symptoms may spontaneously disappear as quickly as they came on, for others a combination of medical and/or surgical treatments control their condition, and they are able to lead relatively normal lives. For others though, both medical and surgical treatments can be limited in their effectiveness, and symptoms may remain. For these patients, treatments with combinations of painkillers and other drugs are required to control the symptoms, though their effectiveness varies.
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  3. steve1404

    steve1404 New Member

    i can offer you a venue free off charge 10 mins outside leeds city centre to put on your function
  4. The_Whippet

    The_Whippet New Member

    You might want to take a look at the following website and get in touch with the organisers there for friendly advice and ideas for your event, good luck with it :icon_smile:

    sunshineappeal dot org dot uk (I can't put the direct link on myself as I'm getting a message accusing anyone of putting a link on here before they've posted more than five times of being a spammer - hmph!)
  5. Joe

    Joe El Duderino

    Steve -

    A very generous offer. Could you provide a few more details about your venue?

    Whippet -

    Apologies for that, you can understand that spam is quite an issue with forums such as this, many people sign up simply to ply their wares with links and then leave therefore contributing nothing in the long run.

    www.sunshineappeal.org.uk is the link for clickiness.
  6. steve1404

    steve1404 New Member

    sure it is oak road sports and social club oak road leeds ls12 it was the old labour club the function room can hold up to 300.00 people any thing else you want just let me know
  7. Rozanne

    Rozanne New Member

    I would advise that once you are up and running with a venue etc. that you should get in touch with a few different Leeds organisations such as Leeds Guide and Visit Leeds. I am on Twitter and it is a great place to gain support for things like this once you are linked to the right people so maybe give it a go...

    Good Luck with it and I hope you keep us updated on here as to how you are getting on.
  8. pauline48

    pauline48 New Member

    Hi Amy
    I hope you get this message. I too am a sufferer of raised intercranial pressure, I was diagnosed in 2006 and after numerous lumber punctures and shunts am still no better than when we started. I am also under the care of thr hallamshire hospital in sheffield and have spent the last few years in and out of there. I live in Chesterfield so not to far away from you , we have most likely past each other on the hospital wards.Please get in touch my e mail is pfidler8563@btinternet.com. i look forward to hearing from you .
    pauline x
  9. nevben

    nevben New Member

    good luck with organising the event, if you plan to have entertainment then I may be able to assist you in getting acts
  10. beastylaus

    beastylaus New Member

    Hi. Happy to offer a complimentary meal for 2 people including wine at the Grosvenor Casino. Please contact Laura on sm_gc-leeds-merrion@rank.com and good luck

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