C - The Brain Charity

The Brain Charity

C.B.D.

Name	CBD (Corticobasal Degeneration)
	See Progressive Supranuclear Palsy

C.R.P.S. (Complex Regional Pain Syndrome)

Name	C.R.P.S. (Complex Regional Pain Syndrome)
	See Complex Regional Pain Syndrome (C.R.P.S.)

C.S.F. leak

Name	CSF Leak
	See Cerebrospinal Fluid Leak

Carpal Tunnel Syndrome

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) https://kidshealth.org/en/kids/carpal.html
Online resources	Carpal tunnel syndrome (NHS Choices) https://tinyurl.com/y8d3es9m Carpal tunnel syndrome exercises (Chartered Society of Physiotherapy website) https://tinyurl.com/yayjmqrz Carpal-Tunnel.net (NHS website) www.carpal-tunnel.net Carpal tunnel syndrome (Versus Arthritis website) https://tinyurl.com/t6pk6ze Carpal Tunnel Syndrome Information Page (U.S. National Institute of Neurological Disorders and Stroke website) https://tinyurl.com/ydluq3b5
Our resources	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 (C.E.S.)

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 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 www.ihavecaudaequina.com Helpline 03335 777113 Spinal Injuries Association www.spinal.co.uk
Children & young people	Cauda Equina Syndrome (Sunrise Children's Hospital, Canada) https://tinyurl.com/vlrmsxl
Online resources	Lumbar decompression surgery - when it's used (NHS Choices) 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.

Cavernoma

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 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. www.cavernoma.org.uk/caverfamilies
Online resources	Cavernomas (NHS Choices website) https://tinyurl.com/y8ukvh98
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. This includes a copy of the Cavernoma Alliance UK booklet "Caverfamilies: Talking about cavernoma with children".

Centronuclear Myopathies

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. http://centronuclear.org.uk
Online resources	Myotubular/Centronuclear Myopathies (Contact, charity for families with dsabled children) 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.

Cerebral Palsy

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 www.scope.org.uk Find your local support services: www.scope.org.uk/Support/services-directory The Foundation for Conductive Education https://conductive-education.org.uk Tel. 0121 442 5556 Mencap Helpline 0808 808 1111 www.mencap.org.uk
Children & young people	Family services (Scope) www.scope.org.uk/family-services
Online resources	Cerebral palsy (NHS Choices website) https://tinyurl.com/ybaoocaw
News and events
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. 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 look in your local library for this book.

Cerebrospinal Fluid Leak

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 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 https://tinyurl.com/yahpsoyz
Types	Spontaneous cerebrospinal fluid leak (SCSFL) Cerebrospinal fluid rhinorrhoea
Useful national contacts	CSF Leak Association www.csfleak.info CSF Leak Association Facebook page: https://tinyurl.com/y76eqxdp Brain & Spine Foundation 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) https://tinyurl.com/yaev4rqb CSF Leak: A Curable Cause of Headache (Cedars-Sinai Hospital, U.S.) https://tinyurl.com/ybkr3c8a Spinal CSF Leak Foundation (U.S.) 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) https://tinyurl.com/ybr23m2u
Our resources	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.

Charcot-Marie-Tooth Disease

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 www.cmt.org.uk Muscular Dystrophy UK Freephone: 0800 652 6352 www.musculardystrophyuk.org
Children & young people	CMT Kids For young people with CMT www.cmt.org.uk/cmt-kids
Online resources	Charcot-Marie-Tooth disease (NHS) https://tinyurl.com/y94xk7c7
News and events
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. Visit our library to read Charcot Marie Tooth Disease: A Practical Guide.

Chiari Malformation

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 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) https://tinyurl.com/y8mrr4bo
Children & young people	Has your child been diagnosed with Chiari? (Conquer Chiari, U.S. charity) https://tinyurl.com/y55y7y7b Chiari I Malformation (For Parents) (KidsHealth) https://kidshealth.org/en/parents/chiari.html
News and events
Online resources	Chiari malformation (Brain & Spine Foundation booklet) https://tinyurl.com/ydgocl32 Chiari malformation and syringomyelia (The Walton Centre) https://tinyurl.com/y34uw8ea Arnold-Chiari malformation and driving (Gov.uk website) https://tinyurl.com/ya344pmn Chiari Malformation (NHS Choices) https://tinyurl.com/yc9xsdch Syringomyelia Fact Sheet (U.S. National Institute of Neurological Disorders and Stroke) https://tinyurl.com/yacac285 Syringomyelia (Contact, charity for families with disabled children) https://tinyurl.com/u2dfgr7 Chiari malformations (Brain & Spine Foundation) https://tinyurl.com/c5gm7rk Chiari malformation (Medline Plus website) http://tinyurl.com/ngd5www Chiari Malformation Patient Information (The Walton Centre NHS Trust) https://tinyurl.com/yygoaenp " Chiari & Syringomyelia: A handbook for patients and their families", American Syringomyelia & Chiari Alliance Project (ASAP).
Our resources	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.

Chronic Fatigue Syndrome (C.F.S.)

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) www.actionforme.org.uk Find your local support group: www.actionforme.org.uk/find-local-services M.E. Association Helpline: 0844 576 5326 (open every day 10am-12 noon, 2-4pm, 7-9pm) www.meassociation.org.uk Find your local support group: 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	Chronic fatigue syndrome (NHS Choices website) https://tinyurl.com/yblzrncb Cochrane Evidence: Exercise as treatment for patients with chronic fatigue syndrome https://tinyurl.com/ycwxwn8g
News and events	'Landmark chronic fatigue trial could treat two-thirds' (BBC website, November 2016) www.bbc.co.uk/news/health-37822068
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. 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.

Cluster Headaches

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) www.ouchuk.org Helpline 01646 651979
Children & young people	Cluster headache in children (Great Ormond Street Hospital) https://tinyurl.com/yyf253fx
Online resources	Cluster Headaches and PIP (The Brain Charity) • Cluster Headaches and PIP Cluster headaches (NHS Choices) https://tinyurl.com/ycffsmod Cluster headache (Migraine Trust) https://tinyurl.com/yc933o62 Headache (Brain & Spine Foundation booklet, includes Cluster Headache) https://tinyurl.com/lv2rgur Cluster Headaches (Patient.info) https://tinyurl.com/y8p9um5o Cochrane Evidence: Normal pressure oxygen therapy and hyperbaric oxygen therapy for migraine and cluster headaches https://tinyurl.com/y9hbqsyv
News and events	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 https://tinyurl.com/y2uzp3sr
Our resources	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.

Complex Regional Pain Syndrome

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 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 www.burningnightscrps.org Pain Concern http://painconcern.org.uk Action on Pain 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 https://tinyurl.com/ydgc8r3c Contact https://tinyurl.com/y7tbltz8
New and events
Online resources	Complex regional pain syndrome (NHS Choices) https://tinyurl.com/yc652e4g Complex Regional Pain Syndrome (CRPS) (Versus Arthritis) https://tinyurl.com/yzb3wqb8 Complex Regional Pain Syndrome (Medline Plus) https://tinyurl.com/yaqjgv6f
Our resources	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.

Creutzfeldt-Jakob Disease (C.J.D.)

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 www.cjdsupport.net Tel: 01630 673973 National CJD Surveillance Unit www.cjd.ed.ac.uk Tel: 0131 537 2128 National Prion Clinic Tel. 020 3448 4037/4038 www.nationalprionclinic.org
Children & young people	Creutzfeldt-Jakob disease facts for kids (Kpedia) https://kids.kiddle.co/Creutzfeldt-Jakob_disease
News and events
Online resources	Creutzfeldt-Jakob Disease (NHS Choices website) https://tinyurl.com/ybwmkkvj Creutzfeldt-Jakob Disease Information Page (U.S. National Institute of Neurological Disorders and Stroke website) 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) 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.