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 (Patient.co.uk website)
Link opens in new window https://tinyurl.com/35jkfcx

Carpal tunnel syndrome (Arthritis Research UK website)
Link opens in new window https://tinyurl.com/ybuvxvc8

Carpal Tunnel Syndrome Information Page (U.S. National Institute of Neurological Disorders and Stroke website)
Link opens in new window https://tinyurl.com/6t5kd
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.

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

I have Cauda Equina
Link opens in new window www.ihavecaudaequina.com
Helpline 03335 777113


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

Online resources Lumbar decompression surgery - when it's used (NHS Choices)
Link opens in new window https://tinyurl.com/ht2mdk4
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 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 a Family)
Link opens in new window https://tinyurl.com/ycvpfshr
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
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 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 Charcot-Marie-Tooth disease (NHS)
Link opens in new window https://tinyurl.com/y94xk7c7
News and events

The 100,000 Genomes Project is looking for people with Charcot-Marie-Tooth disease for research into their DNA and genes
Link opens in new window www.genomicsengland.co.uk/taking-part

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 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/yad4x2ff
Children & young people Association of Young People with ME
support and advice for young people aged from 5-26 and their families
Tel. 0845 123 2389
Link opens in new window www.ayme.org.uk
Children and young people (Action for M.E.)
Link opens in new window www.actionforme.org.uk/children-and-young-people/introduction
Online resources 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
'Testing online treatment for chronic fatigue syndrome (CFS/ME)' (AYME website, November 2016)
Link opens in new window http://tinyurl.com/jddsypo
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
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  
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) (Arthritis Research UK)
Link opens in new window https://tinyurl.com/ycd5o3ke

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
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.