Physical and Neurological Disabilities
Skip down to find many of the organisations and charities that work in this field....
ACQUIRED BRAIN INJURY
is an injury that occurs to the brain after birth. It might result from a blow to the head, oxygen starvation or a variety of medical conditions. Damage to the brain can have far reaching effects on the human body, including paralysis, a reduced ability to think, impaired speech and loss of communication skills.
APHASIA
is a communication disorder brought about by damage to the parts of the brain that control language. It is usually caused by stroke or head injury and can lead to problems with speech, understanding, writing and using numbers. Some people with aphasia are only mildly affected. Those with a severe condition are unable to speak, read or write.
ARTHROGRYPOSIS MULTIPLEX CONGENITA (AMC)
is a term that describes a limitation in the range of movement of multiple joints present at birth. The most common form of AMC, which occurs in about 40 per cent of cases, is amyoplasia. While a few children with AMC might have a learning disability, most of them are intelligent, although physically challenged.
ATAXIA
is a malfunction of muscle coordination, often causing abnormal movement of the head, limbs or trunk. This lack of muscle control can also cause problems with speech. The most frequent cause of ataxia is when that part of the brain known as the cerebellum is damaged either through a hereditary condition or an acquired brain injury.
CEREBRAL PALSY
is a general term for the problems that arise following injury to the cerebrum (the largest part of the brain) before, during or after birth. These problems, which might include muscle stiffness, loss of balance, poor coordination and difficulties with speech, can range from moderate to severe. They affect people in different ways. The majority of children with cerebral palsy usually have some difficulty in walking, but there is no certainty that all children with the condition will have learning difficulties. It is estimated that 1 in every 400 children is born with cerebral palsy.
CHARCOT-MARIE-TOOTH DISEASE (CMT)
is an inherited eurological disorder, which causes degeneration of the peripheral nerves, leading to wasting of the muscles in the forearms, hands, lower legs and feet. Ultimately, this may result in deformities of the feet and hands. Although the disease is incurable, there are treatments and special aids available to help people with CMT lead an active life.
CORNELIA DE LANGE SYNDROME (CdLS)
is a very rare condition, the most striking feature of which is that children with CdLS all look very alike. They are small compared to children of the same age and have distinctive eyebrows, eyelashes, nose and mouth. Most have limb abnormalities and all have some degree of learning difficulty, ranging from mild to severe. The cause of CdLS is not known.
DYSTONIA
is a neurological movement disorder. It is characterised by involuntary and often painful, prolonged muscle contractions which can affect various parts of the body and cause abnormal movements and postures. here is no cure for most forms of dystonia. However, many of its manifestations can be managed successfully.
EPILEPSY
is a condition the main symptoms of which are repeated brain seizures. It can affect anyone and develop at any age but is usually diagnosed before the age of 20 or after the age of 60. There are various types of brain seizure. Absence seizure (also known as petit mal), in which awareness is lost for a short time, occurs mainly in children. Treatment with drugs can greatly reduce, and sometimes eliminate, the number of seizures experienced by the majority of people with epilepsy.
HAND OR ARM DEFICIENCY
refers to the condition of people born without an arm or a hand. The term includes those born with incompletely formed hands or malformed or missing fingers.
LANDAU KLEFFNER SYNDROME (LKS)
only affects children and is a rare form of epilepsy that causes difficulty with the understanding of spoken language. It may lead to loss of speech and the development of behavioural problems. Some children make a complete recovery, but many have lingering difficulties with speech, behaviour or understanding.
LOWER LIMB DEFICIENCIES
is a term encompassing a wide range of abnormalities in the legs and feet. They can occur before or after birth and include incompletely formed legs and feet, hip and knee problems, twisting of the bones in the leg, differences in leg length, and disorders such as club foot.
PRADER-WILLI SYNDROME (PWS)
is a complex genetic disorder. It is characterised by floppiness at birth, poor muscle tone, short stature, immature development of genital organs and an urge to eat constantly which, if not controlled, leads to obesity. Most people with PWS have some degree of behavioural problem and learning difficulty.
LOWER LIMB DEFICIENCIES
is a term encompassing a wide range of abnormalities in the legs and feet. They can occur before or after birth and include incompletely formed legs and feet, hip and knee problems, twisting of the bones in the leg, differences in leg length, and disorders such as club foot.
PRADER-WILLI SYNDROME (PWS)
is a complex genetic disorder. It is characterised by floppiness at birth, poor muscle tone, short stature, immature development of genital organs and an urge to eat constantly which, if not controlled, leads to obesity. Most people with PWS have some degree of behavioural problem and learning difficulty.
SPINAL INJURY
which is typically brought about by falls, road traffic accidents and sports accidents, can damage the spinal cord and result in complete or partial paralysis. Those so injured have to learn how to live again as disabled people. Many of them succeed in developing a full and independent life.
TOURETTE SYNDROME (TS)
frequently starts in childhood. Its characteristic symptoms are muscular tics (twitching) and vocal tics (involuntary noises and sometimes words). TS may also involve behavioural problems similar to attention deficit disorder and attention deficit hyperactivity disorder. While it is known that TS arises from the way the brain develops, its cause is not yet understood.
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| Action for Kids | A.D.D.E.R. | The Arthrogryposis Group | ASBAH |
| Go Kids Go |
Action For Kids
(AFK) is a national charity working with children and young people with physical and learning disabilities and their parents and carers. We help to transform young lives by removing the barriers to independence. Click on the links below to find out more.
At Action For Kids we help disabled children, young people, their parents and carers in three main ways. We provide mobility aids, Work Related Learning (WRL) and offer family support services. In fact we try never to say no and will help in any way we can to enable disabled children and young people lead full and independent lives.
Contact:
Ability House
15A Tottenham Lane
Hornsey
London N8 9DJ
Tel: 020 8347 8111
Email:
info@actionforkids.org
Web:
www.actionforkids.org
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Dystonia
is a little known neurological condition affecting the central nervous system and consists of a group of related movement disorders, characterised by involuntary and often very painful and prolonged spasms of muscle contractions. Recent medical developments means it is now treatable, although it is not yet curable.
A.D.D.E.R. (Action for Dystonia, Diagnosis, Education and Research) covers the entire country but has its roots in the North East of England where it covers Northumberland, Tyne & Wear, Co. Durham and Cleveland and Cumbria.
Contact:
A.D.D.E.R
21 Liddell Terrace
Bensham
Gateshead NE8 1YN
Tel: 0191 477 7700
Fax: 0191 477 7700
Email:
info@actionfordystonia.co.uk
Web:
www.actionfordystonia.co.uk
- Arthrogryposis: you could have been living with it for years, and only just have had a diagnosis; or you might be a parent (or a parent-to-be) of a child with arthrogryposis. Either way, you’ve found your way to
The Arthrogryposis Group
(TAG) and their website is the first step into a community where you’ll find understanding, support and celebration of all that life with a disability can throw at you!
TAG is the national organisation in the UK for the condition arthrogryposis multiplex congenita (AMC). It offers contact, information and support to people with AMC and their families, provides information to professionals and other interested parties seeking to increase their knowledge of AMC.
Contact:
The Arthrogryposis Group (TAG)
Beak Cottage
Dunley
Stourport-on-Severn
DY13 0TZ
Tel: 01299 825781
Email:
info@tagonline.org.uk
Web:
www.tagonline.org.uk
The
Association for Spina Bifida and Hydrocephalus
(ASBAH) is Europe’s largest organisation dedicated to supporting individuals and families as they face the challenges arising from spina bifida and hydrocephalus.
Today, ASBAH is a community of over 75,000 individuals, families, friends, and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues.
It supports parents before and around the birth of their baby, or on diagnosis of the disability.
Contact:
ASBAH
42 Park Road
Peterborough
PE1 2UQ
Tel: 01733 555988
Email:
info@asbah.org
Web:
www.asbah.org
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Go Kids Go
! is a small national charity and our mission is to enable young wheelchair-users throughout the UK to become independently mobile.
The mission of Go Kids Go (The Association for Wheelchair Children) is to equip young wheelchair-users with the skills to help them reach their full potential and also to increase their confidence. The skills and support we offer through our free courses are unique, practical and fun and we believe that it is important to allow parents/carers, siblings and friends to join in with the training, fun and games that we provide. To enable this we carry a stock of spare wheelchairs to our courses and we are always available afterwards to provide advice and support as well as guidance in acquiring the most suitable wheelchair for each individual’s specific needs.
Go Kids Go! has a team of highly skilled trainers who, every year, run over 100 days of mobility skills training with young wheelchair-users and their families across the UK and Ireland and we make absolutely no charge to these families for the services that we offer.
Contact:
Go Kids Go
206 Norwood
Beverley
East Yorkshire
HU17 9JA
Tel: 01482 887163
Email:
roy@go-kids-go.org.uk
Web:
www.go-kids-go.org.uk