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Useful Links

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Advisory Services

Rights Info - A new UK-focussed human rights news and info website. Our site features many human rights infographics and plain-English write-ups of legal cases and has a section dedicated to health. We won the 2015 Plain English Campaign's 'Communicator' award. Visit: www.rightsinfo.org

Health Links

Anencephaly

Awareness of Anencephaly Worldwide - This is an information spreading and awareness website for anencephaly. We offer a contact is page for parents to have someone to talk to who has been through the same experience of dealing with anencephaly. Visit: www.worldwideanencephalyawareness.com

Bowel and Bladder

PromoCon provide a national service to improve the lives of people with bladder or bowel problems by offering product information, advice and practical solutions to both professionals and the general public. Visit: www.disabledliving.co.uk/PromoCon

Interesting Blogs!

Jordan Adams - The blog is about what it's really like to have hydrocephalus, Jordan was diagnosed at the age of 26 and also about her project to get unused shunts from UK hospitals over to developing countries where they cannot afford them - http://jordantheheadcase.wordpress.com

Living with Spina Bifida - Simeon Wakely, who has spina bifida and hydrocephalus, has created this blog to raise awareness of what it is like living with these conditions and to support young people who have similar challenges. Visit: livingwithspinabifida.co.uk

General Links

Carers

Counselling Directory only lists counsellors and psychotherapists registered with a recognised professional body or have proven qualifications and insurance cover. Find a counsellor or psychotherapist dealing with Carer Support, click here!

Clothing

CAPR-Style offer a range of adaptive clothing for children and young adults. Designed around the needs of the wearer the clothing is made to look traditional whilst discreetly including adaptive features to improve the quality of life of the wearer. Visit: www.capr-style.com

Disability Rights

Disability Rights UK - provide information and guidance for disabled people on accessing good services and support, including education, work, independent living, benefits and health services, and what to do if services fall short. Visit: www.disabilityrightsuk.org/ Tel: 020 7250 8181 (open Mon-Fri, between 10.00 and 12.30pm and 1.30 and 4.00pm). Email:

Folic Acid

Folic Acid Canada - A website dedicated to inform expecting mothers about the benefits of folic acid. Visit: www.folicacid.ca

Grants

Disability Grants - Set up by a mum with a son who has CP, the disability grants website aims to help other parents and the disabled people find grants. The directory of grants includes those for children, holidays, housing, recreation and much more! Visit: www.disability-grants.org

Intracranial Hypertension 

IIH UK is dedicated to providing sources of information and support to people with Idiopathic Intracranial Hypertension (IIH). Visit: www.iih.org.uk

Medical Services

DrugWatch - Our goal is to provide information about medications and medical devices, in order to help people learn more about the associated risks and potential side effects. Visit: www.drugwatch.com

Safety

Easybelts - is a velcro closing belt for young people and adults. Easybelts has proved to be helpful in enabling those that struggle with the common belt buckle mechanism. The Easybelt replaces the pin mechanism with velcro allowing the person to secure the belt with easy, we also offer a larger D-Ring for those with limited hand coordination. Visit: www.easybelts.co.uk

Support Services

Disability Advice Centre Glasgow (DAC) provides confidential and holistic information and support to people with a long-term health condition or disability, their families/carers and health professionals. Visit: www.shaw-trust.org.uk/disability-advice-centre-glasgow/

Headway - the brain injury association

Headway is the UK-wide charity that works to improve life after brain injury. Through a range of frontline services run from its Nottingham base and via a network of more than 100 groups and branches across the UK, it provides support, services and information to brain injury survivors, their families and carers, as well as to professionals in the health and legal fields. W: www.headway.org.uk T: 0808 800 2244 E: 

Therapy

Therapy Directory promote the benefits of complementary therapy and aim to give visitors all the information they need to help them make an informed decision about whether therapy would be right for them. The website has an FAQ's section, a number of useful articles written by their members and the facility to search for a practitioner in your area. Visit: www.therapy-directory.org.uk

Travel

Cruise Holidays UK - "As a travel agent who is disabled and with a visually impaired partner I understand how great cruise holidays can be for those with accessible travel needs." Visit: www.silverservicecruises.cruiseholidaysuk.co.uk

Heathrow Airport Guide have recently added a section to our network of Airport Guides that provides information about disabled access and special/medical needs at the airport. Visit: www.heathrow-airport-guide.co.uk

Vision

VisionCall provides free (NHS funded) home eye tests to anyone who has spina bifida and/or hydrocephalus anywhere in the UK! Visit: www.vision-call.co.uk

Vitamin B12

B12 deficiency Support Group (Reg Charity 1146432) aims to raise awareness of this condition amongst doctors and the general public, so that people can be diagnosed appropriately. Visit: www.b12d.org

Pernicious Anaemia Society exists to provide Information, Help and Support to sufferers of Pernicious Anaemia and B12 Deficiency and their families and friends. Visit: www.pernicious-anaemia-society.org

Regional Links

Durham

DIG is an online database which allows you to search for information on adult social care services, health groups and other community information on a countywide, regional and national basis. Visit: www.durham.gov.uk/dig

Hampshire

Portsmouth Parent Partnership - The Portsmouth Parent Partnership Service offers parents and carers living in the PO1 –PO6 area free, confidential and impartial information and advice about their child’s Special Educational Needs (SEN). Visit: www.askportsmouth.org

Scotland

SBH Scotland - For those living in Scotland with spina bifida, hydrocephalus and related conditions, Spina Bifida Hydrocephalus Scotland provide a lifetime commitment of support and information. Helpline: 03455 211 300 or visit www.sbhscotland.org.uk

Sporting Links

Cycling

Quest 88 Cycle Hub (Shrewsbury) is an inclusive cycling hub and adaptive bike specialists, offering advice and free weekly rides every Wednesday that allow people to try out bikes in a safe and friendly environment. Visit: www.cycling-hub.co.uk

Wheels for Wellbeing (WfW) is a south London charity supporting disabled people of all ages and abilities to enjoy the benefits of cycling. We have a fleet of more than 200 inclusive cycles, including two, three and four wheelers, hand cycles and wheelchair cycles. Whether you’re using two legs, one leg or none, or want to get around with a parent, friend or carer – we have a wide range of inclusive cycles for you to try out. We believe that cycling is for everyone and should be inclusive – allowing everyone to enjoy the benefits. Visit: www.wheelsforwellbeing.org.uk/inclusive-cycling

Submit your useful link

If you think your website would be of interest or use to our community of 75,000 individuals, families, friends, and professionals, living with hydrocephalus, or spina bifida, and related issues, please use the form at the bottom of this page to submit your details.

Disclaimer: All the sites listed here have been checked for suitability. However, the constantly changing nature of the internet means some sites may alter after we have visited them. Shine is not responsible for the content of external websites.

News

Shine celebrates 50 years of support for people with spina bifida and hydrocephalus

HRH The Duchess of Gloucester, GCVO, attended a launch service in Peterborough to mark…

Did You Know?

Some babies with spina bifida are now operated on before they are born via keyhole surgery.

Hydrocephalus can be congenital or acquired.

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

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously!

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected!

Shunt: a device that diverts accumulated CSF around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: 
fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and fits.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance.....

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.

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