Name Brain Injury
Related to/Also known as Acquired Brain Injury (ABI)
Traumatic Brain Injury (TBI)
Head Injury
Symptoms of Brain Injury
An injury to the head or face, resulting in trauma to the brain. The brain injury may be mild to severe, and the subsequent impact can likewise be from mild, short-term problems to permanent problems including emotional and behavioural changes, cognitive effects and physical disability.
Types  
Useful national contacts Headway
Helpline: 0808 800 2244
Link opens in new window www.headway.org.uk
Find your local support group:
Link opens in new window https://tinyurl.com/yb8lgz98
Brain and Spine Foundation
Helpline: 0808 808 1000
Link opens in new window www.brainandspine.org.uk
Brake (road safety charity)
Helpline for road crash victims: 0808 800 0401
Link opens in new window www.brake.org.uk
UK Acquired Brain Injury Forum
Tel. 0845 608 0788
Link opens in new window www.ukabif.org.uk
Brain Injury Rehabilitation and Development
Tel: 0800 0286256
Link opens in new window www.birdcharity.org.uk

CSF Leak Association
Charity working to raise the profile and support understanding of cerebrospinal fluid (CSF) leaks, and provides support to sufferers and carers.
Link opens in new window www.csfleak.info
Children & young people

The Children’s Trust for children with Brain Injury, has resources for families supporting children and young people with a brain injury at this time:  Coronavirus: useful resources and support

Child Brain Injury Trust
For families and professionals affected by childhood acquired brain injury
Link opens in new window https://childbraininjurytrust.org.uk
• Find loal support:  https://tinyurl.com/y3a28o6s


The Legacy Rainbow House
For children with acquired brain injury
Tel: 01704 823 276
Link opens in new window www.thelegacy-rainbowhouse.com


SameYou
charity for young adults with brain injury and stroke
Link opens in new window www.sameyou.org

Online resource Head Trauma (Facial Palsy UK)

Link opens in new window https://tinyurl.com/osyc3ak



 

Does my brain hate me? TBI survivor's blog
Link opens in new window www.doesmybrainhateme.co.uk

Chronic Traumatic Encephalopathy (NHS website)
Link opens in new window www.nhs.uk/conditions/chronic-traumatic-encephalopathy

Brain injury study finds chronic fatigue widely misunderstood (Headway, May 2019)
Link opens in new window https://tinyurl.com/sjmgsu7

News and events  
Our resources MediKidiz Explain Aquired Brain Injury

The library at The Brain Charity has a range of resources on Brain Injury and on a wide range of disability-related issues.

Visit our library to read the book for young people MediKidz Explain Aquired Brain Injury.

Name  Brain tumour
Related to/Also known as  
Symptoms of Brain Tumour A tumour which occurs in the brain, which may be benign (slow growing, non-cancerous), or malignant (invasive, often grows rapidly and cancerous). Each type of tumour has different characteristics.
Types There are many different types of brain tumours. You can find a useful explanation and list at:
Link opens in new window https://tinyurl.com/ya4fzzyp
Useful national contacts Brain Tumour Action
Tel. 0131 466 3116
Link opens in new window www.braintumouraction.org.uk

The Brain Tumour Charity
Tel. 0845 4500 386
Link opens in new window www.thebraintumourcharity.org
Find your local support group:
Link opens in new window https://tinyurl.com/y8kbmpzj
• The Brain Tumour Charity Liverpool Support Group meets at The Brain Charity


BT Buddies
support for high-grade tumours
Tel: 01688 400 687(9am - 9pm)
Link opens in new window www.btbuddies.org.uk
Astro Fund
support for low-grade tumours
Tel. 01485 572767
Link opens in new window www.astrofund.org.uk
Brainstrust
Tel: 01983 292 405
Link opens in new window www.brainstrust.org.uk
Brain Tumour Support
Support Services tel. 01454 422701​
Link opens in new window www.braintumoursupport.co.uk

Brain and Spine Foundation
Helpline: 0808 808 1000
Link opens in new window www.brainandspine.org.
Children & young people

HeadSmart
Common signs and symptoms of a brain tumour in babies, children and teenagers.
Link opens in new window www.headsmart.org.uk

Brain and Spinal Tumours (Children With Cancer UK)
Link opens in new window https://tinyurl.com/y64efjj4

What should I tell my children about my brain tumour? (Brain and Spine Foundation)
Link opens in new window https://tinyurl.com/c7zs2hp

Online resources

Coronavirus/COVID-19 and brain tumours (Brain Tumour Trust)
Link opens in new window https://brainstrust.org.uk/corona-comms

Advice for people at high risk - Coronavirus (COVID-19) (NHS)
wLink opens in new windowww.nhs.uk/conditions/coronavirus-covid-19/advice-for-people-at-high-risk

Coronavirus COVID-19 and brain tumours (The Brain Tumour Charity)
Link opens in new window www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/coronavirus-and-brain-tumours

Losing Myself: The Reality of Life with a Brain Tumour (The Brain Tumour Charity)
Link opens in new window www.thebraintumourcharity.org/about-us/our-publications/losing-myself-reality-life-brain-tumour/ 
News and events

 

 

Our resources

Alex's Journey: The story of a child with a brain tumour The library at The Brain Charity has a range of resources on Brain Tumour and on a wide range of disability-related issues.

Visit our library to read Alex's Journey: The story of a child with a brain tumour.

Name Carpal Tunnel Syndrome
Related to/Also known as  
Symptoms of Carpal Tunnel Syndrome

Carpal Tunnel Syndrome occurs when the nerve running into the hand becomes entrapped or compressed at the wrist, as it passes through the 'carpal tunnel.'

Early symptoms include tingling affecting parts or all of the hand and symptoms are often worse at night.

Types  
Useful national contacts Currently no national support groups.
Children & young people Carpal Tunnel Syndrome (KidsHealth)
Link opens in new window https://kidshealth.org/en/kids/carpal.html
Online resources Carpal tunnel syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/y8d3es9m
Carpal tunnel syndrome exercises (Chartered Society of Physiotherapy website)
Link opens in new window https://tinyurl.com/yayjmqrz

Carpal-Tunnel.net (NHS website)
Link opens in new window www.carpal-tunnel.net
Carpal tunnel syndrome (Versus Arthritis website) 
Link opens in new window https://tinyurl.com/t6pk6ze
Carpal Tunnel Syndrome Information Page (U.S. National Institute of Neurological Disorders and Stroke website)
Link opens in new window https://tinyurl.com/ydluq3b5
Our resources

Carpal Tunnel Syndrome The library at The Brain Charity has a range of resources on Carpal Tunnel Syndrome and on a wide range of disability-related issues.

Visit our library to read our copy of Arthritis Research UK's booklet Carpal Tunnel Syndrome.

Cauda Equina Syndrome (Sunrise Children's Hospital, Canada) ...

Name Cauda Equina Syndrome (CES)
Related to/Also known as  
Symptoms of Cauda Equina Syndrome

The nerves of the Cauda Equina are responsible for the supply of nerves to the bladder, bowels, lower limbs and also supply sensation to the skin around the bottom and back passage.

This syndrome has a complex spectrum of signs and symptoms. If your doctor has suspicions of CES, then in some cases it can be confirmed with an MRI scan.

Types Saddle Anaesthesia
Nerve Root Pain
Useful national contacts Cauda Equina Syndrome UK
Link opens in new window https://caudaequinauk.org.uk
This email address is being protected from spambots. You need JavaScript enabled to view it.
Tel. 0800 989 0053
Cauda Equina Syndrome Association
Link opens in new window www.ihavecaudaequina.com
Helpline 03335 777113

Spinal Injuries Association
Link opens in new window www.spinal.co.uk

Children & young people Cauda Equina Syndrome (Sunrise Children's Hospital, Canada)
Link opens in new window https://tinyurl.com/vlrmsxl
Online resources Lumbar decompression surgery - when it's used (NHS Choices)
Link opens in new window www.nhs.uk/conditions/lumbar-decompression-surgery
Our resources The library at The Brain Charity has a range of resources on this condition and on a wide range of disability-related issues.

Name Cavernoma
Related to/Also known as Cavernous Angioma, Cavernous Haemangioma, or Cerebral Cavernous Malformation
Symptoms of Cavernoma
A cavernoma is a cluster of abnormal blood vessels in the brain or spinal cord. They are not cancerous and for many people they are asymptomatic (no symptoms). For those who do have symptoms they can include haemorrhages, seizures, headaches, tremor and other neurological deficits.
Types  
Useful national contacts Cavernoma Alliance UK (CAUK)
Tel: 01305 213 876
Link opens in new window www.cavernoma.org.uk
Children & young people CaverFamilies
CaverFamilies events and meetings are exclusively for young people who have, or have had, cavernoma; their parents and siblings.
Link opens in new window www.cavernoma.org.uk/caverfamilies
Online resources

Coronavirus and Cavernoma (Cavernoma Alliance UK)
Link opens in new window www.cavernoma.org.uk/news/coronavirus
 

Cavernomas (NHS Choices website)
Link opens in new window https://tinyurl.com/y8ukvh98

Our resources Caverfamilies

The library at The Brain Charity has a range of resources on this condition and on a wide range of disability-related issues.

This includes a copy of the Cavernoma Alliance UK booklet "Caverfamilies: Talking about cavernoma with children".

Name Centronuclear Myopathies
Related to/Also known as Centronculear/Myotubular Myopathy;
Congenital Myopathies
Symptoms of Centronuclear Myopathy
Centronuclear and myotubular myopathy are rare inherited neuromuscular diseases of which there are three forms: x-linked, autosomal recessive, and autosomal dominant. The conditions manifest themselves as defects in the cell structure of voluntary muscles, causing low muscle tone and affecting children and adults at various stages in life.
Types  
Useful national contacts The Information Point for Centronuclear and Myotubular Myopathy
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Link opens in new window http://centronuclear.org.uk
Online resources Myotubular/Centronuclear Myopathies (Contact, charity for families with dsabled children)
Link opens in new window https://tinyurl.com/v8x2rse
Our resources The library at The Brain Charity has a range of resources on this condition and on a wide range of disability-related issues.

Name Cerebral Palsy
Related to/Also known as  
Symptoms of Cerebral Palsy
Cerebral Palsy is a disorder of movement and posture. It is due to damage to, or failure in, the areas of the brain which control movement. The effects vary from individual to individual; difficulties include awkwardness in walking, or of hand and arm movements, or speech.
Types

Spastic Cerebral Palsy - stiffens muscles and decreases range of movement of joints.

Athetoid Cerebral Palsy - frequent involuntary movements, speech hard to understand and hearing problems are common.

Ataxic Cerebral Palsy - difficult to balance, poor spatial awareness.

Useful national contacts Scope
Helpline: 0808 800 3333
Link opens in new window www.scope.org.uk
Find your local support services:
Link opens in new window www.scope.org.uk/Support/services-directory
The Foundation for Conductive Education
Link opens in new window https://conductive-education.org.uk
Tel. 0121 442 5556
Mencap
Helpline 0808 808 1111
Link opens in new window www.mencap.org.uk
Children & young people Family services (Scope)
Link opens in new window www.scope.org.uk/family-services
Online resources Coronavirus information (Scope)
Link opens in new window www.scope.org.uk/coronavirus-information

Cerebral palsy (NHS Choices website)
Link opens in new window https://tinyurl.com/ybaoocaw
News and events  
Our resources

Can I tell you about Cerebral Palsy? The library at The Brain Charity has a range of resources on this condition and on a wide range of disability-related issues.

Visit our library to read Can I tell you about Cerebral Palsy? A guide for friends, family and professionals by M. Stanton and K. Stanton. Or have a Link opens in new window look in your local library for this book.
Find this in a library at WorldCat.org

Name  Cerebrospinal Fluid (CSF) Leak
Related to/Also known as 

Low-pressure headache
Intracranial hypotension

May sometimes be caused by Spinal Injury, Brain Injury, or Subarachnoid Haemorrhage; or may sometimes be caused by medical procedures, such as those relating to Hydrocephalus or Multiple Sclerosis.

Symptoms of CSF Leak

"A cerebrospinal fluid leak occurs when there is a tear or hole in the membranes that surround the brain and spinal cord, and the fluid that surrounds these structures escapes. As a result of this leak, the overall pressure within the skull can drop (which is referred to as intracranial hypotension) and this can cause headaches as well as other neurological symptoms."

Source: The Brain & Spine Foundation
Link opens in new window https://tinyurl.com/ybx6gfjo

" Common symptoms

  • Headache that is worse when upright and better when horizontal (but other patterns do occur)
  • Nausea and vomiting
  • Neck pain or stiffness
  • Change in hearing (muffled, underwater, tinnitus) "

Source: U.S. Spinal CSF Leak Foundation
Link opens in new window https://tinyurl.com/yahpsoyz

Types
  • Spontaneous cerebrospinal fluid leak (SCSFL)
  • Cerebrospinal fluid rhinorrhoea
Useful national contacts

CSF Leak Association
Link opens in new window www.csfleak.info
CSF Leak Association Facebook page:
Link opens in new window https://tinyurl.com/y76eqxdp

Brain & Spine Foundation
Link opens in new window www.brainandspine.org.uk
Helpline freephone 0808 808 1000,
Monday to Thursday, from 9am to 4pm, and Fridays, from 9am to 1pm. Not open on Bank Holidays.

Online resources

Spontaneous Intracranial Hypotension (U.S. National Organization for Rare Disorders)
Link opens in new window https://tinyurl.com/yaev4rqb

CSF Leak: A Curable Cause of Headache (Cedars-Sinai Hospital, U.S.)
Link opens in new window https://tinyurl.com/ybkr3c8a

Spinal CSF Leak Foundation (U.S.)
Link opens in new window http://spinalcsfleak.org

News and events "Duncan James: I had spinal fluid coming out of my back and doctors told me I might never walk again" (Daily Mail, August 2016)
Our resources

Headache The library at the Brain Charity has a wide range of resources on disability-related issues. This includes a copy of the Brain & Spine Foundation's booklet on headache.

Name Charcot-Marie-Tooth Disease
Related to/Also known as Hereditary Motor and Sensory Neuropathy
Symptoms of Charcot-Marie-Tooth Disease
Charcot-Marie-Tooth Disease is a condition which affects the peripheral nerves (in the arms and legs) and leads to progressive muscle weakness. Both the sensory nerves, which send messages back to the brain about touch and feel, and motor nerves, controlling movement, are affected.
Types  
Useful national contacts

Charcot-Marie-Tooth UK
Freephone: 0300 323 6316
Link opens in new window www.cmt.org.uk

Muscular Dystrophy UK
Freephone: 0800 652 6352
Link opens in new window www.musculardystrophyuk.org

Children & young people CMT Kids
For young people with CMT
Link opens in new window www.cmt.org.uk/cmt-kids
Online resources Detailed guidance on risks from coronavirus for patients with muscle-wasting conditions (Muscular Dystrophy UK)
Link opens in new window www.musculardystrophyuk.org/news/news/detailed-guidance-on-risks-from-coronavirus
Charcot-Marie-Tooth disease (NHS)
Link opens in new window https://tinyurl.com/y94xk7c7
News and events

Our resources Charcot Marie Tooth Disease: A Practical Guide

The library at The Brain Charity has a range of resources on this condition and on a wide range of disability-related issues.

 Visit our library to read Charcot Marie Tooth Disease: A Practical Guide.

Name Chiari malformation
Related to/Also known as

Syringomyelia

Arnold-Chiari Malformation
A Chiari
Hindbrain Hernia
Chiari I, II, III
Spina bifida
Hydrocephalus

Symptoms of Chiari malformation

Syringomyelia is a disorder affecting the nervous system, where fluid-filled cavities develop inside the spinal cord. A variety of conditions lead to the formation of syringomyelia cavities. The most common factor is obstruction to the normal flow of CSF (cerebrospinal fluid within the spinal cord). Possible causes include Hindbrain Hernia, also referred to as Chiari Malformation, and spinal cord injury.

Symptoms vary, ranging from neck and arm pain, through to fairly severe disability, with muscle weakness and paralysis.

Types  
Useful national contacts

Ann Conroy Trust
Link opens in new window www.annconroytrust.org
Tel: 0300 111 0004
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Chiari Malformation Group: A space for you (Facebook group of the Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/y8mrr4bo

Children & young people

Has your child been diagnosed with Chiari? (Conquer Chiari, U.S. charity)
Link opens in new window https://tinyurl.com/y55y7y7b

Chiari I Malformation (For Parents) (KidsHealth)
Link opens in new window https://kidshealth.org/en/parents/chiari.html

News and events  
Online resources

Chiari malformation (Brain & Spine Foundation booklet)
Link opens in new window https://tinyurl.com/ydgocl32


Chiari malformation and syringomyelia (The Walton Centre)
Link opens in new window https://tinyurl.com/y34uw8ea

Arnold-Chiari malformation and driving (Gov.uk website)
Link opens in new window https://tinyurl.com/ya344pmn


Chiari Malformation (NHS Choices)
Link opens in new window https://tinyurl.com/yc9xsdch

Syringomyelia Fact Sheet (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/yacac285


Syringomyelia (Contact, charity for families with disabled children)
https://tinyurl.com/u2dfgr7
Chiari malformations (Brain & Spine Foundation)
Link opens in new window Link opens in new window https://tinyurl.com/c5gm7rk
Chiari malformation (Medline Plus website)
Link opens in new window http://tinyurl.com/ngd5www

Chiari Malformation Patient Information (The Walton Centre NHS Trust)
Link opens in new window https://tinyurl.com/yygoaenp


"Link opens in new window Chiari & Syringomyelia: A handbook for patients and their families", American Syringomyelia & Chiari Alliance Project (ASAP).

Our resources Jessica's Journey: One family's experience of chiari malformation in a child

The library at The Brain Charity has a range of  resources on Chiari Malformation and on a wide range of disability-related issues.

This includes the booklet "Jessica's Journey: One family's experience of chiari malformation in a child" by Kirsty Leigh.

Name Chronic Fatigue Syndrome (CFS)
Related to/Also known as see also Myalgic Encephalomyelitis (ME)
Post-Viral Fatigue Syndrome (PVFS)
Symptoms of Chronic Fatigue Syndrome
M.E. is a potentially chronic and disabling neurological disorder, which is characterised by persistent fatigue and muscle pain. Symptoms can include cognitive problems such as loss of memory and concentration, recurrent sore throat and enlarged neck glands, disturbed sleep patterns and persistent headaches.
Types  
Useful national contacts ACTION for M.E.
Tel: 0845 123 2314 (Mon-Fri, 11am-1pm)
Link opens in new window www.actionforme.org.uk
Find your local support group:
Link opens in new window www.actionforme.org.uk/find-local-services
M.E. Association
Helpline: 0844 576 5326 (open every day 10am-12 noon, 2-4pm, 7-9pm)
Link opens in new window www.meassociation.org.uk
Find your local support group:
Link opens in new window https://tinyurl.com/yjmxrhqu
Children & young people Association of Young People with ME
support and advice for young people aged from 5-26 and their families
Helpline: 0330 2211223
This email address is being protected from spambots. You need JavaScript enabled to view it.
Online resources Coronavirus and M.E./CFS (Action for ME)
Link opens in new window www.actionforme.org.uk/living-with-me/coronavirus-and-me-cfs

Chronic fatigue syndrome (NHS Choices website)
Link opens in new window https://tinyurl.com/yblzrncb

Cochrane Evidence: Exercise as treatment for patients with chronic fatigue syndrome
Link opens in new window https://tinyurl.com/ycwxwn8g
News and events 'Landmark chronic fatigue trial could treat two-thirds' (BBC website, November 2016)
Link opens in new window www.bbc.co.uk/news/health-37822068
Our resources

Can I tell you about M.E. / C. F.S. ? The library at The Brain Charity has a range of resources on this condition and on a wide range of disability-related issues.

Visit our library to read Can I Tell You About ME/Chronic Fatigue Syndrome? A guide for friends, family and professionals by J. Rayner and J. Lithgoe-Hay.

Name Cluster Headaches
Related to/Also known as

Migrainous Neuralgia

see also Migraine

Symptoms of Cluster Headaches
Cluster Headache is an excruciating pain that affects one side of the head. Each attack develops suddenly, usually without any warning. Attacks last from 15 minutes to 3 hours and usually occur in clusters - several attacks over a few weeks or months and then they stop for a while.
Types
  • Episodic (ECH)
  • Chronic (CCH)
Useful national contacts

OUCH (UK)
Link opens in new window www.ouchuk.org
Helpline 01646 651979

Children & young people Cluster headache in children (Great Ormond Street Hospital)
Link opens in new window https://tinyurl.com/yyf253fx
News and Events March 21st is Cluster Headache Awareness Day
Link opens in new window https://ouchuk.org/forum/cluster-headache-awareness-day-poster-2020
Online resources

Cluster Headaches and PIP (The Brain Charity)
Cluster Headaches and PIP

Cluster headaches (NHS Choices)
Link opens in new window https://tinyurl.com/ycffsmod


Cluster headache (Migraine Trust)
Link opens in new window https://tinyurl.com/yc933o62

Headache (Brain & Spine Foundation booklet, includes Cluster Headache)
Link opens in new window https://tinyurl.com/lv2rgur
Cluster Headaches (Patient.info)
Link opens in new windowhttps://tinyurl.com/y8p9um5o
Cochrane Evidence: Normal pressure oxygen therapy and hyperbaric oxygen therapy for migraine and cluster headaches
Link opens in new window https://tinyurl.com/y9hbqsyv
News and events Fireccrest Films
Channel 5 is looking for people with migraine to take part in a new documentary.

  • Do you have migraine and are over 18 years of age?
  • Have you been diagnosed by a medical professional?
  • Are you about to begin treatment or have you tried multiple treatments with no success?
  • Are you frustrated by a lack of awareness or understanding around migraines?
  • Would you be interested in trying the latest migraine treatment options?

If this is something you would like to be a part of, please contact FirecrestFilms  This email address is being protected from spambots. You need JavaScript enabled to view it. or call 0141 530 2333 ext 380

 

Cluster Headache Survey. Research volunteers needed!
For OUCH members only
Link opens in new window https://tinyurl.com/y2uzp3sr

Our resources A Guide to the Understanding of Cluster Headache

The library at The Brain Charity has a range of resources on Cluster Headaches and on a wide range of disability-related issues.

Visit our library to read the booklet A Guide to the Understanding of Cluster Headache by OUCH.

Name Complex Regional Pain Syndrome (CRPS)
Related to/Also known as Reflex Sympathetic Dystrophy (RSD)
Symptoms of CRPS
CRPS is a chronic pain disorder, which can occur after trivial injury, often involving soft tissue around joints. The pain is extremely severe, and far outweighs that normally produced by tissue damage. It can go into spontaneous remission or be a long-lasting problem.
Types Type I - CRPS I, also known as RSD (when there is no identifiable nerve injury)
Type II - CRPS II is what used to be known as Causalgia (where there is an identifiable nerve injury)
Useful national contacts CRPS-UK
Link opens in new window https://crps-uk.org
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Burning Nights
CRPS awareness and support in the U.K. and around the world
Link opens in new window www.burningnightscrps.org


Pain Concern
Link opens in new window http://painconcern.org.uk


Action on Pain
Link opens in new window https://tinyurl.com/ybzlm45a

Children & young people  Volunteers wanted for studies looking at Complex Regional Pain Syndrome in young people (July 2018)
online study by the University of Bath
Link opens in new window https://tinyurl.com/ydgc8r3c
Contact https://tinyurl.com/y7tbltz8
New and events  
Online resources Complex regional pain syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/yc652e4g

Complex Regional Pain Syndrome (CRPS) (Versus Arthritis)
Link opens in new window https://tinyurl.com/yzb3wqb8

Complex Regional Pain Syndrome (Medline Plus)
Link opens in new window https://tinyurl.com/yaqjgv6f
Our resources

Complex Regional Pain Syndrome The library at The Brain Charity has a range of resources on CRPS and on a wide range of disability-related issues.

Visit our library to read Complex Regional Pain Syndrome (CRPS) Explained. For Teenagers, by Teenagers by G. R. Lauder and R. Massey.

Name Creutzfeldt-Jakob Disease (CJD)
Related to/Also known as  
Symptoms of CJD
CJD is a rare, untreatable, fatal illness affecting the brain. It is one type of the group of transmissible spongiform encephalopathies (TSEs). CJD is divided into four different forms, which all have different causes and symptoms, but they all have the same basic disease process of the accumulation of abnormal prion protein in the brain tissue:
Types
  • Sporadic CJD, of unknown cause and occurs mainly in the middle-aged and elderly.
  • Genetic CJD, very rare and due to an inherited genetic defect.
  • Iatrogenic CJD, results from accidental transmission by medical or surgical equipment.
  • Variant CJD (vCJD) - a new form of the disease, which has emerged in recent years, linked to a prion disease which affects cattle, bovine spongiform encephalopathy, or BSE. Variant CJD appears to affect younger people.
Useful national contacts CJD Support Network
Link opens in new window www.cjdsupport.net
Tel: 01630 673973

National CJD Surveillance Unit
Link opens in new window www.cjd.ed.ac.uk
Tel: 0131 537 2128


National Prion Clinic
Tel. 020 3448 4037/4038
Link opens in new window www.nationalprionclinic.org
Children & young people Creutzfeldt-Jakob disease facts for kids (Kpedia)
Link opens in new window https://kids.kiddle.co/Creutzfeldt-Jakob_disease
News and events  
Online resources Creutzfeldt-Jakob Disease (NHS Choices website)
Link opens in new window https://tinyurl.com/ybwmkkvj

Creutzfeldt-Jakob Disease Information Page (U.S. National Institute of Neurological Disorders and Stroke website)
Link opens in new window https://tinyurl.com/y99mbozu

Notification and support for people exposed to the risk of Creutzfeldt-Jakob disease (CJD) (or other prion diseases) through medical treatment (Cochrane website)
Link opens in new window https://tinyurl.com/yc8r4cuu
Our resources

The library at The Brain Charity has a range of resources on Creutzfeldt-Jakob Disease (CJD) and on a wide range of disability-related issues.

Name Dementia
Related to/Also known as  
Symptoms of Dementia

Dementia is a term used to describe various different brain disorders, that have in common a loss of brain function that is usually progressive and eventually severe. The most common type of dementia is Alzheimer's Disease.

Symptoms of dementia include loss of memory, confusion and problems with speech.

• The British Deaf Association has information in BSL about Dementia.

Types There are over 100 different types of dementia. In addition to Alzheimer's Disease, Vascular Dementia, and Dementia With Lewy Bodies are the most common. For more information see the Alzheimer's SocietyLink opens in new window website
Useful national contacts

Dementia UK
Provides mental health nurses specialising in dementia care, called Admiral Nurses.
Link opens in new window www.dementiauk.org
Tel. 020 7697 4160

Admiral Nurses
Link opens in new window www.dementiauk.org/what-we-do/admiral-nurses

Young Dementia UK
Link opens in new window www.youngdementiauk.org


Lewy Body Society
Link opens in new window http://lewybody.org
Tel. 0131 473 2385


Alzheimer's Society (covers England, Wales, N. Ireland)
Link opens in new window www.alzheimers.org.uk
Helpline: 0845 300 0336
Alzheimer's Society: Carer Information and Support Programme (CrISP)
Link opens in new window https://tinyurl.com/y89h96xa


Alzheimer Scotland (covers Scotland)
Link opens in new window www.alzscot.org
Helpline: 0808 808 3000


Huntingdon's Disease Association
Link opens in new window www.hda.org.uk
Tel. 0151 331 5444 


Parkinson's UK
Link opens in new window www.parkinsons.org.uk
Tel: 0808 800 0303


Stroke Association
Link opens in new window www.stroke.org.uk
Tel. 0303 3033 100

Children & young people 

Explaining dementia to children and young people (Alzheimer's Society)
Link opens in new window https://tinyurl.com/y4bcceg4

Resources for Children and Young People (Dementia UK)
Link opens in new window www.dementiauk.org/children-and-young-people

Online resources

Effect of coronavirus on people living with dementia (The Brain Charity)

Coronavirus: Information for people affected by dementia (Alzheimer's Society)
Link opens in new window Coronavirus: Information for people affected by dementia

Alzheimer's Society - The Dementia Guide (YouTube)
Link opens in new window http://youtu.be/RLBuygIcttU

Making your home dementia friendly (Alzheimer's Society)
Link opens in new window https://tinyurl.com/yajevnxq

News and events  
Our resources

Can I tell you about dementia?The library at The Brain Charity has a range of resources on Dementia and on a wide range of disability-related issues.

Visit our library to read Can I tell you about dementia? A guide for families, friends and carers by J. Welton and J. Telford. Or have a Link opens in new window look in your local library for this book.
Find this in a library at WorldCat.org

Name  Down's Syndrome
Related to/Also known as  Down Syndrome
Symptoms of Down's Syndrome
"Down's syndrome, also known as Down syndrome, is a genetic condition that typically causes some level of learning disability and characteristic physical features."
Source: NHS Choices
Link opens in new window https://tinyurl.com/cy8q7ad
Useful national contacts

Down's Syndrome Association
Helpline: 0333 1212 300
Link opens in new window www.downs-syndrome.org.uk
Find your local support group:
Link opens in new window https://tinyurl.com/yahn8r42


Down's Syndrome Scotland
Phone: 0131 442 8840
Link opens in new window www.dsscotland.org.uk

Down's Heart Group
Phone: 0300 102 1644
Link opens in new window www.dhg.org.uk
Mencap
charity for people with a learning disability
Helpline 0808 808 1111
Link opens in new window www.mencap.org.uk
Find your local support group:
Link opens in new window www.mencap.org.uk/search/groups
Children & young people New Parent Pack (Down's Syndrome Association)
Link opens in new window https://tinyurl.com/y8t2a4bn
News and events  
Online resources

Link opens in new window Easy-Read guide to Coronavirus from Mencap

Coronavirus (COVID-19) (Down's Syndrome Association)
Link opens in new window www.downs-syndrome.org.uk/coronavirus-covid-19

Down's syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/cy8q7ad


Down syndrome (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/v8jn7ou
Why the abortion law should be changed to prevent the terminations of foetuses with non-fatal disabilities after the 24th week (BBC, February 2020)
Link opens in new window https://tinyurl.com/ur6krnp
Our resources

The library at the Brain Charity has a range of resources on Down's Syndrome and on a wide range of disability related issues.

This includes information on Down's and epilepsy, and on Down's and dementia.

Name  Dysautonomia
Related to/Also known as
  • Riley-Day syndrome
  • HSAN Type III
Symptoms of Dysautonomia

"Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.

"Dysautonomia can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac [coeliac], Sjogren's syndrome, lupus, and Parkinson's."

Source: Dysautonomia International
www.dysautonomiainternational.org

Types Includes:
  • Diabetic Autonomic Neuropathy (DAN)
  • Familial dysautonomia
  • Generalized dysautonomia
  • Multiple System Atrophy
  • Postural tachycardia syndrome (PoTS)
Useful national contacts

Jnetics (formally Jewish Genetic Disorders UK)
Link opens in new window www.jnetics.org
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

UK Potsies
Link opens in new window www.ukpotsies.org.uk

Dysautonomia International
Link opens in new window www.dysautonomiainternational.org

Childen & young people

Living a Life With Dysautonomia in Children (Dysautonomia POTS Syndrome website)
Link opens in new window https://tinyurl.com/y3ua6jps

Brain injury - Dysautonomia (Kids Health Info, Royal Children's Hospital Melbourne)
Link opens in new window https://tinyurl.com/y4rrvdul

News and events "Camilla sees benefits of medical alert dogs on charity visit" (Wolverhampton Express and Star, February 20, 2019)
Link opens in new window https://tinyurl.com/y5h6su29
Online resources

Coronavirus & Dysautonomia (Dysautonomia International)
Link opens in new window www.dysautonomiainternational.org/page.php?ID=227

Familial Dysautonomia (Contact, charity for familiies with disabled children)
Link opens in new window https://tinyurl.com/sgy9sbh

Autonomic Neuropathy (Diabetes.co.uk)
Link opens in new window http://tinyurl.com/y4hy3g4k

Postural tachycardia syndrome (PoTS) (NHS website)
Link opens in new window https://tinyurl.com/ycxju2b9

Dysautonomia Information Page (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window http://tinyurl.com/y499zwts

Dysautonomia, Familial (U.S. National Organizarion for Rare Disorders)
Link opens in new window http://tinyurl.com/yyuajgvm

Our resources

The library at the Brain Charity has a range of resources on Dysautonomia and on a wide range of disability-related issues.

Name  Dyscalculia
Related to/Also known as 
Symptoms of Dyscalculia
"Dyscalculia is a specific learning difference, which affects the ability to acquire arithmetical skills and an intuitive grasp of numbers"

Source: Loughborough University Link opens in new window https://tinyurl.com/y9rrv6cb

"Developmental Dyscalculia (DD) is a specific learning disorder that is characterised by impairments in learning basic arithmetic facts, processing numerical magnitude and performing accurate and fluent calculations. these difficulties must be quantifiably below what is expected for an individual’s chronological age, and [is not] caused by poor educational or daily activities or by intellectual impairments"

Source: British Dyslexia Association  Link opens in new window https://tinyurl.com/y8qobbjo

Types
  • Developmental Dyscalculia:  a specific learning disability (SpLD)
  • Acalculia:  as a result of brain injury or stroke, a person may no longer be able to do even basic maths
Useful national contacts

The British Dyslexia Association
Tel. 0333 405 4567.
Opening times: 10 a.m. – 12.30 and 1 p.m. - 4 p.m. Mondays to Fridays. Closed Wednesday afternoons
Link opens in new window www.bdadyslexia.org.uk

Scope
Helpline: 0808 800 3333
Link opens in new window www.scope.org.uk
Find your local support services:
Link opens in new window www.scope.org.uk/Support/services-directory

Children & young people What is Dyscalculia? Why Some Kids Struggle with Maths While Doing Well at Other Subjects? (Centre for Neuroscience in Education)
Link opens in new window https://tinyurl.com/yzsm27am
Online resources

The Dyscalculia Information Centre
Link opens in new window www.dyscalculia.me.uk

What is Dyscalculia? (East Midlands Dyslexia Association)
Link opens in new window https://tinyurl.com/yaz566nn

Dyscalculia (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/tllvrqj

What is Dyscalculia? (Dyslexia Association)
Link opens in new window https://tinyurl.com/yyqojnlf

Dyscalculia (Judy Hornigold)
Link opens in new window http://judyhornigold.co.uk/dyscalculia.html

News and events  
Our resources

The library at the Brain Charity has a wide range of resources on disability-related issues.

Name  Dyslexia
Related to/Also known as  
Symptoms of Dyslexia
Dyslexia is a specific kind of learning difficulty, where a child of normal intelligence has persistent and significant problems with reading, writing and spelling, and sometimes with arithmetic and musical notation.
Types  
Useful national contacts The British Dyslexia Association
Tel. 0333 405 4567.
Opening times: 10 a.m. – 12.30 and 1 p.m. - 4 p.m. Mondays to Fridays. Closed Wednesday afternoons
Link opens in new window www.bdadyslexia.org.uk
Dyslexia Action
Tel. 01784 222300
Link opens in new window www.dyslexiaaction.org.uk
Dyslexia Foundation
Tel. 0151 709 0545
Link opens in new window https://dyslexiafoundation.org
Dyslexia-SplD Trust
Link opens in new window www.thedyslexia-spldtrust.org.uk
Children & young people

My child's education (British Dyslexia Association)
Link opens in new window https://tinyurl.com/y6nq89zf

Online resources

Dyslexia (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/vtkzj

Dyslexia - Symptoms (NHS website)
Link opens in new window https://tinyurl.com/zwv8smq

Dyslexia Guide (Hampstead & Frognal Tutors Ltd)
with resources including helpful strategies, and tests, plus details of apps and the latest technology to help you to better manage reading and writing
Link opens in new window https://tinyurl.com/y8fzg7je

How to support a pupil with dyslexia (Engage Education)
Link opens in new window https://tinyurl.com/qv8zk52

News and events  
Our resources

Can I tell you about dementia? The library at The Brain Charity has a range of resources on Dyslexia and on a wide range of disability-related issues.

Visit our library to read Can I tell you about Dyslexia? A guide for friends, family and professionals by Alan M. Hultquist. Or look for this book in your local library.

Name Dyspraxia
Related to/Also known as
  • Developmental Co-ordination Disorder (D.C.D.)
  • Motor Learning Difficulties
  • Perceptuo-Motor Dysfunction
  • Apraxia
Symptoms of Dyspraxia
Dyspraxia is a developmental disorder of organisation and planning of physical movement. Developmental dyspraxia (see below) affects co-ordination, spatial awareness, perception, language and short-term memory.
Types
  • Developmental dyspraxia is when someone is born with dyspraxia.
  • Acquired dyspraxia can be caused by a stroke or head injury.
Useful national contacts The Dyspraxia Foundation
Tel. 01462 454986, 10am-1pm, Mon-Friday
Link opens in new window www.dyspraxiafoundation.org.uk
Children & young people Dyspraxia in children (Dyspraxia Foundation)
Link opens in new window https://tinyurl.com/yxnyl2yp
Developmental co-ordination disorder in children ('Patient' website)
Link opens in new window https://tinyurl.com/yyp9w8dd
Children with verbal dyspraxia (The Communication Trust)
Link opens in new window https://tinyurl.com/y62m5ovb
Online resources

Neurodiversity and Co-occurring differences: Dyspraxia (DCD) (British Dyslexia Associarton)
Link opens in new window https://tinyurl.com/yxnczlp2

Dyspraxia (developmental co-ordination disorder) in adults (NHS website)
Link opens in new window https://tinyurl.com/y43dq8c3

News and events

'How Doctor Who tackles dyspraxia in series 11' (Radio Times, October 2018)
Link opens in new window https://tinyurl.com/ybmgdcvz

Our resources

can I tell you about Dyspraxia? The library at The Brain Charity has a range of resources on Dyspraxia and on a wide range of disability-related issues.

Visit our library to read Can I tell you about Dyspraxia? A guide for friends, family and professionals, by Maureen Boon. Or have a Link opens in new window look in your local library for this book.
Find this in a library at WorldCat.org

Name  Dystonia
Related to/Also known as  
Symptoms of Dystonia
Dystonia is a disorder which causes muscles in the body to contract and spasm involuntarily. Spasms may affect one part of the body or many parts simultaneously and can be very painful.
Types

The Dystonias can be defined in terms of which body parts are involved.

  • Focal - affects one part
  • Segmental - 2 or more adjacent body parts
  • Multifocal - 2 or more non-adjacent parts
  • Generalised

Primary focal dystonia are the most common including:

  • Cervical dystonia (or spasmodic torticollis) affects the neck muscles.
  • Blepharospasm affects the muscles of the eyelids.
  • Hand dystonia/writer's cramp affects the hand and finger muscles
  • Laryngeal dystonia (or spasmodic dysphonia) affects the vocal chords.
  • Oromandibular dystonia affects the muscles in the jaw, mouth and tongue.
Useful national contacts The Dystonia Society
Helpline: 0845 458 6322
Link opens in new window www.dystonia.org.uk
Find your local support group:
https://tinyurl.com/y2ga7azz
• The Liverpool & Merseyside Support Group meets at The Brain Charity
Children & young people Children and dystonia (The Dystonia Society)
Link opens in new window https://www.dystonia.org.uk/children-and-dystonia
Online resources

Coronavirus and Dystonia (The Dystonia Society)
Link opens in new window www.dystonia.org.uk/news/coronavirus-dystonia

Dystonia (NHS website)
Link opens in new window www.nhs.uk/conditions/dystonia


Dystonia and Parkinson's disease (Dystonia Society)
Link opens in new window https://tinyurl.com/yyo2pot8
News and events

Sign Joanne's petition: Dystonia needs to be recognised by all medical professions & occupational therapists
Link opens in new window https://tinyurl.com/y9y6d6pv

Our resources

Medikidz Explain Dystonia ManagementThe library at The Brain Charity has a range of resources on Dystonia and on a wide range of disability-related issues.

This includes the book for children and young people Medikidz Explain Dystonia Management.

Name Encephalitis
Related to/Also known as  
Symptoms of Encephalitis
 Encephalitis is an inflammation of the brain, usually occurring as a result of viral infection.
Types  Many types including:
  • Rasmussen's Encephalitis
  • Hashimoto's Encephalitis
  • Subacute-sclerosing panencephalitis
Useful national contacts Encephalitis Society

Tel. 01653 699 599
Link opens in new window www.encephalitis.info

Children & young people Encephalitis in children: E-learning (Encephalitis Society)
Link opens in new window www.encephalitis.info/encephalitis-in-children-e-learning
News and events Tick-borne encephalitis: "Brain illness spread by ticks has reached UK" (BBC October 2019)
Link opens in new window ww.bbc.co.uk/news/health-50206382
Online resources  
Our resources

The library at The Brain Charity has a range of resources on this condition and on a wide range of disability-related issues.

We have copies of the Encephalitis Society's guidebooks Encepahalitis in Adults and Encephalitis in Children

Our library includes a copy of the book Medikidz Explain Encephalitis, which is also available to request from the Encephaltis Society.

Gilley the Giraffe... who changedVisit our library to read our copy of the children's book Gilley the Giraffe... who Changed by Nimmi Channa and Phil Lynch.


 

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