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Preston lady diagnosed with idiopathic intracranial hypertension, a condition that affects 1 or 2 ppl in every 100k!

Preston lady diagnosed with idiopathic intracranial hypertension, a condition that affects 1 or 2 ppl in every 100k! | Hydrocephalus UK | Scoop.it

The family of a seriously ill woman today told of their devastation after she was diagnosed with a second rare condition.

Cheryl and Gary Harwood are trying to raise awareness after their 21-year-old daughter Alex developed the illness, which causes an increase in pressure around the brain.

The couple, from Cairnsmore Avenue, Preston, said that Alex, who already has Leigh’s Disease, had been particularly unlucky in being hit by another, unrelated, condition called idiopathic intracranial hypertension or IIH.

 

Downloadable + FREE information sheets on idiopathic intracranial hypertension available! Click: http://www.shinecharity.org.uk/hydrocephalus/information-publications ;

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Intracranial Hypertension and the child at school

Sometimes called Idiopathic Intracranial Hypertension, benign Intracranial Hypertension or Pseudotumour Cerebri is a rare condition which occurs in about 1 or 2 (Intracranial Hypertension and the child at school by @ShineUKCharity on @slideshare #Free...
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Hydrocephalus behaviour

Many of the calls we receive are about behaviour.
ShineUKCharity's insight:

Many of the calls we receive are about behaviour. Unfortunately, as parents, our ability to manage our child’s behaviour seems to be one of those things that identifies us as ‘good’ or ‘bad’ parents, which is why when things seem to be going wrong it is often distressing.


The first thing to remember is that all parents have difficulties with their child’s behaviour sometimes and the second is that though we can’t control children’s behaviour, we can manage it.

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Parents of Hydrocephalus Children Complain of Neglect - AllAfrica.com

Parents of Hydrocephalus Children Complain of Neglect - AllAfrica.com | Hydrocephalus UK | Scoop.it
Parents of Hydrocephalus Children Complain of Neglect
AllAfrica.com
The baby's enlarged head came from fluid-cerebrospinal fluid accumulating in her brain.
ShineUKCharity's insight:

A 37-year old mother of four, Vera Okafor, knows firsthand what dealing with a child with hydrocephalus means.

 

Pregnant with her first child at six months, she went for scanning and the result showed that there was nothing wrong with her baby.

 

But her hopes for a normal child was cut short when a week before delivery, she went for another scan and this time around, she was not prepared for the outcome of the result.

 

For more and FREE information on Hydrocephalus please visit: http://www.shinecharity.org.uk/hydrocephalus

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Remember it's the "Coffee & Chat social session - Doncaster" on the 9th of Jan 2013

Remember it's the "Coffee & Chat social session - Doncaster" on the 9th of Jan 2013 | Hydrocephalus UK | Scoop.it
This is an informal meeting and provides a chance for members to get together over a coffee, for a chat and a chance to…
ShineUKCharity's insight:

On Jan 9th its the informal meeting and providing a chance for members to get together over a coffee, for a chat and a chance to meet their Support and Development Worker Geraldine Whittle.


Parking is free and several bus routes pass the hotel.

Ramped access is at the rear of the building.

For further information or to confirm your attendance please contact Geraldine E:geraldine.whittle@shinecharity.org.uk or T: 01142322398

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Docs warned she'd have 2 undergo series of operations 2 halt symptoms of Idiopathic Intracranial Hypertension (IIH) @SunderlandEcho

Docs warned she'd have 2 undergo series of operations 2 halt symptoms of Idiopathic Intracranial Hypertension (IIH) @SunderlandEcho | Hydrocephalus UK | Scoop.it

THE mum of a teenager with a devastating brain condition today welcomed the launch of major new research into the illness.

 

Katie Williamson, 18, has a crippling affliction that causes a build-up of spinal fluid, putting pressure on her brain and triggering debilitating sight problems and migraines.

 

Doctors warned her when she was just 13 that she would have to undergo a series of operations in a bid to maintain her sight and halt the symptoms of Idiopathic Intracranial Hypertension (IIH) that had plagued her for months.

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Neurological specialists begin "groundbreaking" research into treatment of children + adults with #hydrocephalus

Neurological specialists begin "groundbreaking" research into treatment of children + adults with #hydrocephalus | Hydrocephalus UK | Scoop.it

Neurological specialists in Liverpool are leading a groundbreaking research project which could significantly impact upon the treatment of children and adults with hydrocephalus.

 

Neurosurgeons from Alder Hey Children’s Hospital and The Walton Centre will be the chief investigators for the study, which has recently been awarded a £2m grant from the NIHR HTA* programme.

 

Hydrocephalus is a build-up of cerebrospinal fluid (the fluid which carries nutrients to the brain) in the brain. This excess fluid puts increased pressure on the brain, causing damage to brain tissue. The condition affects one in every 500 births and is one of the most common developmental disabilities in children. It also affects older children and adults and can be related to a variety of causes, including trauma, brain tumours, haemorrhage and infection.

 

The trial was designed with clinical trialists at the University of Liverpool Medicines for Children Research Network Clinical Trials Unit (MCRN CTU). Trial coordination will be led by the MCRN CTU and supported by the NIHR Clinical Research Network. It will involve recruitment of patients across paediatric and adult regional neurosurgery units in the UK and Ireland. The MCRN and SHINE (Spina Bifida, Hydrocephalus, Information, Networking, Equality) have been approached to assist in identifying appropriate individuals to provide patient and public representation as members of the trial team.

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NPH results when the flow of CSF is blocked in some way........ FIND out MORE!

NPH results when the flow of CSF is blocked in some way........ FIND out MORE! | Hydrocephalus UK | Scoop.it

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.


NPH Awareness Video - http://www.shinecharity.org.uk/hydrocephalus/what-is-nph

 

This eye-catching video was kindly supported by Codman.

 

It was created for a pilot NPH awareness campaign in the Bristol area where it was shown in 37 GP surgeries. It is available for everyone to view on Youtube. Created by Susan Elliott, a student at the Bristol School of Animation (UWE), the animation demonstrates the key symptoms of NPH in an eye catching way. Watch it now! http://www.shinecharity.org.uk/hydrocephalus/what-is-nph

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When a child with hydrocephalus joins a school, the school should have a plan in case of shunt malfunction!

When a child with hydrocephalus joins a school, the school should have a plan in case of shunt malfunction! | Hydrocephalus UK | Scoop.it

When a child with hydrocephalus joins a school, the school will need to ascertain what action should be taken in the event that the child has a problem that could be related to his/her hydrocephalus and the parents are unavailable.

 

The preferences of neurosurgeons vary with each hospital unit – some like the child to be transported direct to the neurosurgical unit, others prefer the child to be assessed at a local A&E department first.

 

Signs of acute shunt malfunction or blockage may include; vomiting or nausea, abdominal pain, photophobia (sensitivity to light) + other visual disturbances, drowsiness, seizures (fits), headache and dizziness.

 

READ: http://www.shinecharity.org.uk/hydrocephalus/information-publications/shunt-malfunction ;

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"The impact HYDROCEPHALUS can have on learning + behaviour varies with each individual."

"The impact HYDROCEPHALUS can have on learning + behaviour varies with each individual." | Hydrocephalus UK | Scoop.it

The impact that hydrocephalus can have on learning and behaviour varies with each individual. Some people may have very few problems, where as in others the consequences can be much more serious.

 

It is important to remember that children with hydrocephalus often have a number of specific learning difficulties, which may mean that they learn in a different way, and need different strategiesto help them. Additionally, if children are struggling at school, either academically or with their social relationships this can have a detrimental effect on self- esteem, which in itself can cause behavioural difficulties. If you think this may be an issue it is important to talk to your child’s school.

 

Human behaviour is extremely complicated. Psychologists, sociologists, philosophers, educationalists, politicians and many other groups have studied, analysed and argued over many years about how and why we behave in particular ways. This has led to a multitude of theories about how behaviour can be managed and in recent years numerous television programmes and books which often make it look very easy!

 

Parents, and teachers, often feel de-skilled when faced with a child who does not behave appropriately.

 

http://www.shinecharity.org.uk/hydrocephalus/information-publications/behaviour ;

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"Anencephaly is an abnormal development of the brain + skull...." Find out more by visiting out website!

"Anencephaly is an abnormal development of the brain + skull...." Find out more by visiting out website! | Hydrocephalus UK | Scoop.it

What is Anencephaly?

Anencephaly is an abnormal development of the brain and skull which occurs during the first weeks of pregnancy. The upper part of the brain and its protective skull cap are missing and the lower part of the brain and the base of the skull are not properly formed.

Sadly, this is always a fatal condition. Whatever anybody does, your baby cannot and will not live.

 

What causes Anencephaly?

Anencephaly is due to failure of the basic part of the brain to form during the first 24 days after conception.

 

FIND OUT MORE: http://www.shinecharity.org.uk/hydrocephalus/information-publications/anencephaly ;

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Preston lady diagnosed with idiopathic intracranial hypertension, a condition that affects 1 or 2 ppl in every 100k!

Preston lady diagnosed with idiopathic intracranial hypertension, a condition that affects 1 or 2 ppl in every 100k! | Hydrocephalus UK | Scoop.it

The family of a seriously ill woman today told of their devastation after she was diagnosed with a second rare condition.

Cheryl and Gary Harwood are trying to raise awareness after their 21-year-old daughter Alex developed the illness, which causes an increase in pressure around the brain.

The couple, from Cairnsmore Avenue, Preston, said that Alex, who already has Leigh’s Disease, had been particularly unlucky in being hit by another, unrelated, condition called idiopathic intracranial hypertension or IIH.

 

Downloadable + FREE information sheets on idiopathic intracranial hypertension available! Click: http://www.shinecharity.org.uk/hydrocephalus/information-publications ;

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Brain's hidden sewers revealed - Science News

Brain's hidden sewers revealed - Science News | Hydrocephalus UK | Scoop.it

The brain is a self-cleaning machine. A previously unknown plumbing system blasts out waste by flushing it with the brain’s cleaning solution — cerebrospinal fluid.

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Benny Bear Books 4 Children with #Hydrocephalus

Benny Bear Books 4 Children with #Hydrocephalus | Hydrocephalus UK | Scoop.it

@ only £8 for the set - Benny Bear Books 1-5 are a GREAT way to help explain hydrocephalus to your child!


CLICK: http://www.ebay.co.uk/itm/Benny-Bear-Books-1-5-/221032233856?pt=Children_s_Young_Adult_s_Fiction&hash=item33768c3b80#ht_1175wt_952 

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Going to College or University with Intracranial Hypertension

Sometimes called Benign Intracranial Hypertension, Idiopathic Intracranial Hypertension or Pseudotumour Cerebri is a rare condition which occurs in about 1 or 2 (Going to College or University with Intracranial Hypertension by @ShineUKCharity on @slideshare...
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"Jack needs another operation, to create more space at the back of his skull,"

"Jack needs another operation, to create more space at the back of his skull," | Hydrocephalus UK | Scoop.it
BBC News
'You're going to have an operation'
BBC News
Jack needs another operation, to create more space at the back of his skull, so that the cerebrospinal fluid that surrounds his brain can flow freely.
ShineUKCharity's insight:

Among the children being treated by neurosurgeon Jay Jayamohan at Oxford's John Radcliffe Hospital is 19-year-old Jack.


He has Crouzon Syndrome - causing his skull to fuse too early and damaging his brain - and has had 27 operations, with much of his childhood spent in hospital.

 

Jack needs another operation, to create more space at the back of his skull, so that the cerebrospinal fluid that surrounds his brain can flow freely.

 

Having treated Jack for nine years, Mr Jayamohan is concerned about the complexity of the procedure.

 

Brain Doctors is shown on BBC Two at 21:00 GMT on Wednesday 13 February.

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How is hydrocephalus treated?

How is hydrocephalus treated? | Hydrocephalus UK | Scoop.it
ShineUKCharity's insight:

Some forms of hydrocephalus require no specific treatment. Other forms are temporary and do not require treatment on a long-term basis.


However, most forms do require treatment and this is usually surgical. Drugs have been used for many years but they may have unpleasant side effects and are not often successful.


The usual treatment is to insert a shunting device. It is important to note that this does not ‘cure’ the hydrocephalus and damage to the brain tissue remains.


Shunting controls the pressure by draining excess CSF, so preventing the condition becoming worse. Symptoms caused by raised pressure usually improve but other problems of brain damage will remain.

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Intracranial hypertension could be an issue for Astronauts!

Intracranial hypertension could be an issue for Astronauts! | Hydrocephalus UK | Scoop.it
Astronaut Hadfield a ready, willing guinea pig StarPhoenix The vision changes could be a symptom of a much more serious problem known as intracranial hypertension, a condition in which pressure builds within the skull, Hamilton and his colleagues...
ShineUKCharity's insight:

According to the article, some "...astronauts' vision has changed permanently..."

 

Going on to say that the ".... vision changes could be a symptom of a much more serious problem known as intracranial hypertension, a condition in which pressure builds within the skull..."


Read more: http://www.thestarphoenix.com/health/Astronaut+Hadfield+ready+willing+guinea/7735791/story.html#ixzz2GA1D3aEX

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Bourne woman Jane Woodcock recovering after brain surgery - Rutland and Stamford Mercury

Bourne woman Jane Woodcock recovering after brain surgery - Rutland and Stamford Mercury | Hydrocephalus UK | Scoop.it

A mother is hoping for a pain-free future after undergoing brain surgery to help deal with a rare neurological disorder.

 

Jane Woodcock, 48, of The Gables, Bourne, has idiopathic intracranial hypertension, otherwise known as IIH.

 

The space around her brain is filled with excess spinal fluid which causes intense pressure inside her skull.

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NEWS: "PLYMOUTH mum with Idiopathic Intracranial Hypertension, has vital surgery cancelled 3 times" @thisisplymouth

NEWS: "PLYMOUTH mum with Idiopathic Intracranial Hypertension, has vital surgery cancelled 3 times" @thisisplymouth | Hydrocephalus UK | Scoop.it

A MOTHER has been left "angry" and "devastated" after her life-changing operation was cancelled three times.

 

A top NHS director at Derriford Hospital has now personally apologised to Rachel Lavis for the delay in her treatment.

 

The mother-of-four from Plympton has a condition called Idiopathic Intracranial Hypertension which is caused by a build up of brain fluid that can lead to brain damage and blindness.

 

She has been ill since November 2011 but was only diagnosed in March of this year.

 

READ more: http://www.thisisplymouth.co.uk/Plymouth-mum-vital-brain-surgery-cancelled-times/story-17009063-detail/story.html ;

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Management of hydrocephalus - We've got EVERYTHING you NEED 2 KNOW 4 free HERE!

Management of hydrocephalus - We've got EVERYTHING you NEED 2 KNOW 4 free HERE! | Hydrocephalus UK | Scoop.it
Shunt alert cards

A small information card stating  the type of shunt a person has  and the symptoms of malfunction.  Mainly for use in emergency  situations. They are available through  Shine and you can order yours by simply visiting here: http://www.shinecharity.org.uk/hydrocephalus/shunt-alert-cards

 

GP leaflet

A guide to hydrocephalus will be sent to your GP on request.  Remember, you may be the only patient he/she has with  hydrocephalus, so he/she will need all the information available.

Referral procedure

If you have not been seen by a neurosurgeon in the last 5 years to have your shunt checked, you will need to be re-referred to the hydrocephalus clinic via your GP.

Baseline scans

Even though you are not experiencing any problems with your shunt, it is advisable that a baseline scan is taken when you are well. This will help to determine treatment, should you develop any pressure problems, the consultant will then know the size of your ventricles when well. If you have not had a scan in the last 5 years, you may need a referral - see referral procedures above.

Eye check

Individuals with a shunt are advised to have eye checks every 6 months. Raised intracranial pressure may cause pressure at the back of the eyes. Eye checks therefore assist early diagnosis.

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Department of Health: “Every effort should be made to ensure that all children are immunized..."

Department of Health: “Every effort should be made to ensure that all children are immunized..." | Hydrocephalus UK | Scoop.it

Vaccines are made from parts of bacteria or viruses that cause infections; when people are vaccinated they will make their own immunity to the specific diseases.

 

Modern vaccines are very safe and will not cause the infections they are designed to prevent. Vaccination is considered to be safe for children with spina bifida and hydrocephalus, indeed far safer than the consequences of cquiring any of the serious diseases. In many cases vaccination will not only protect those vaccinated but also help to prevent the disease in other contacts at home or school. In each case there are some people who should not receive a certain vaccine, or who should seek medical advice if in doubt.

 

The official Department of Health advice is: “Every effort should be made to ensure that all children are immunized, even if they are older than the recommended age range; no opportunity to immunize should be missed.”

 

http://www.shinecharity.org.uk/hydrocephalus/information-publications/vaccinations-and-hydrocephalus ;

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"Kids with hydrocephalus typically have problems understanding language ........."

"Kids with hydrocephalus typically have problems understanding language ........." | Hydrocephalus UK | Scoop.it

Many of the calls we receive are about behaviour. Unfortunately, as parents, our ability to manage our child’s behaviour seems to be one of those things that identifies us as ‘good’ or ‘bad’ parents, which is why when things seem to be going wrong it is often distressing.

 

The first thing to remember is that all parents have difficulties with their child’s behaviour sometimes and the second is that though we can’t control children’s behaviour, we can manage it.

 

*** How hydrocephalus may impact on learning and behaviour ***

 

Children with hydrocephalus typically have problems with understanding language, concentration, short term memory and processing information. All of these, potentially, can have an impact on behaviour.

 

If you can ‘t remember instructions then you won’t be able to carry them out. If you have trouble transferring knowledge to new situations itmay be that you can do something in one place but not another. If you don’t understand jokes your friends may think you‘re a bit ‘odd’.

 

READ MORE: http://www.shinecharity.org.uk/hydrocephalus/information-publications/behaviour

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KIRKCALDY woman Linzie Nicol was born with hydrocephalus and numerous other disabilities.

KIRKCALDY woman Linzie Nicol was born with hydrocephalus and numerous other disabilities. | Hydrocephalus UK | Scoop.it

KIRKCALDY woman Linzie Nicol was born with a bi-lateral cleft lip and palate as well as hydrocephalus and numerous other disabilities.

 

She had no top lip and the bottom part of her nose was missing, making her disabilities all the more obvious.

The hydrocephalus, or water on the brain, meant that her condition was life threatening, and Linzie (40), spent the first six months of her life in hospital, undergoing major surgery just to ensure she survived.

 

Then in the first 26 years of her life she underwent dozens more gruelling operations to rebuild her face and correct the other major problems in her body, and recalls years of taunting and bullying because she looked “different” to everyone else.

 

After around 40 operations Linzie decided enough was enough and called a halt to the surgery, and she has gone on to lead a productive and independent life.

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BALLYMENA woman diagnosed with benign intracranial hypertension could have lost sight!

BALLYMENA woman diagnosed with benign intracranial hypertension could have lost sight! | Hydrocephalus UK | Scoop.it

A BALLYMENA woman was diagnosed with benign intracranial hypertension, following an eye examination at her local Specsavers store. It could have left her blind within months, if left untreated!

 

Loads of FREE + Useful info on "Intracranial Hypertension" - HERE: http://www.shinecharity.org.uk/hydrocephalus/intracranial-hypertension

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Wonder who'll win this year's "Shine Young Achiever" award??

Wonder who'll win this year's "Shine Young Achiever" award?? | Hydrocephalus UK | Scoop.it

Shine Young Achiever (for a young person up to the age of 25) The Shine Achievement Awards will be presented at the Annual General Meeting on 29th November. 


CAST your vote NOW: http://www.shinecharity.org.uk/shineawards

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