How We Can Help - The Brain Charity

The Brain Charity

Brain Tumour

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: https://tinyurl.com/ya4fzzyp
Useful national contacts	Brain Tumour Action Tel. 0131 466 3116 www.braintumouraction.org.uk The Brain Tumour Charity Tel. 0845 4500 386 www.thebraintumourcharity.org Find your local support group: 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) www.btbuddies.org.uk Astro Fund support for low-grade tumours Tel. 01485 572767 www.astrofund.org.uk Brainstrust Tel: 01983 292 405 www.brainstrust.org.uk Brain Tumour Support Support Services tel. 01454 422701 www.braintumoursupport.co.uk Brain and Spine Foundation Helpline: 0808 808 1000 www.brainandspine.org.
Children & young people	HeadSmart Common signs and symptoms of a brain tumour in babies, children and teenagers. www.headsmart.org.uk Brain and Spinal Tumours (Children With Cancer UK) https://tinyurl.com/y64efjj4 What should I tell my children about my brain tumour? (Brain and Spine Foundation) https://tinyurl.com/c7zs2hp
Online resources	Coronavirus/COVID-19 and brain tumours (Brain Tumour Trust) https://brainstrust.org.uk/corona-comms Coronavirus (COVID-19) and cancer (Cancer Research UK) www.cancerresearchuk.org/about-cancer/cancer-in-general/coronavirus-and-cancer Advice for people at high risk - Coronavirus (COVID-19) (NHS) www.nhs.uk/conditions/coronavirus-covid-19/advice-for-people-at-high-risk Coronavirus COVID-19 and brain tumours (The Brain Tumour Charity) 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) www.thebraintumourcharity.org/about-us/our-publications/losing-myself-reality-life-brain-tumour Living with a condition (The Brain Charity)
News and events
Our resources	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.

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	Versus Arthritis Web: www.versusarthritis.org Email: This email address is being protected from spambots. You need JavaScript enabled to view it. Helpline: 0800 5200 520 Find local support: www.versusarthritis.org/in-your-area
Children & young people	Carpal Tunnel Syndrome (KidsHealth) https://kidshealth.org/en/kids/carpal.html
Online resources	Coronavirus and how to manage your pain at home (Versus Arthritis) www.versusarthritis.org/news/2020/april/coronavirus-and-how-to-manage-your-pain-at-home Carpal tunnel syndrome (Versus Arthritis) www.versusarthritis.org/about-arthritis/conditions/carpal-tunnel-syndrome 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 Living with a condition (The Brain Charity)
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.)

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	Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19 Lumbar decompression surgery - when it's used (NHS Choices) www.nhs.uk/conditions/lumbar-decompression-surgery Living with a condition (The Brain Charity)
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	The Cavernoma Society www.cavernomasociety.org.uk Facebook: /cavernomasociety Twitter: /thecavernomasoc Instagram: /cavernoma_society 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	Coronavirus and Cavernoma (Cavernoma Alliance UK) www.cavernoma.org.uk/news/coronavirus Cavernomas (NHS Choices website) https://tinyurl.com/y8ukvh98 Living with a condition (The Brain Charity)
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
News and Events	Survey: Treatment of Childhood Neurological Conditions (British Paediatric Neurology Association, September 2020) https://www.surveymonkey.co.uk/r/BPNA_JLA_RESEARCH_PSP
Online resources	Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19 Myotubular/Centronuclear Myopathies (Contact, charity for families with dsabled children) https://tinyurl.com/v8x2rse Living with a condition (The Brain Charity)
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 Preparing for adult life (Contact, charity for families with disabled children) https://contact.org.uk/advice-and-support/preparing-for-adult-life
Online resources	Coronavirus information (Scope) www.scope.org.uk/coronavirus-information Cerebral palsy (NHS Choices website) https://tinyurl.com/ybaoocaw Living with a condition (The Brain Charity)
News and events	Survey: Treatment of Childhood Neurological Conditions (British Paediatric Neurology Association, September 2020) https://www.surveymonkey.co.uk/r/BPNA_JLA_RESEARCH_PSP Research Participants Needed! Research investigation on the relationship between cerebral palsy, anxiety and participation (Scope and the University of Bristol, June 2020) https://tinyurl.com/y7n68bmj
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	Coronavirus (COVID-19) & Cerebrospinal Fluid (CSF) Leaks (CSF Leak Association) www.csfleak.info/coronavirus-and-cerebrospinal-fluid-leaks 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 Living with a condition (The Brain Charity)
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	COVID-19: Guidelines on Charcot Marie Tooth disease from the Neuromuscular Service, NHNN www.cmt.org.uk/covid-19-guidelines-on-charcot-marie-tooth-disease-from-the-neuromuscular-service-national-hospital-for-neurology-and-neurosurgery-nhnn-queen-square-london-prepared-by-professor-mary-m-reilly Coronavirus - COVID-19 (Charcot-Marie-Tooth UK) www.cmt.org.uk/coronavirus-covid-19 Detailed guidance on risks from coronavirus for patients with muscle-wasting conditions (Muscular Dystrophy UK) www.musculardystrophyuk.org/news/news/detailed-guidance-on-risks-from-coronavirus Charcot-Marie-Tooth disease (NHS) https://tinyurl.com/y94xk7c7 Living with a condition (The Brain Charity)
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	Chiari Malformation 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 Syringomyelia, 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	Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19 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 Living with a condition (The Brain Charity) " 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	Coronavirus warning as victims staying sick for MONTHS with ‘post-Covid syndrome’ (ME Association, July 2020) https://meassociation.org.uk/2020/07/coronavirus-warning-as-victims-staying-sick-for-months-with-post-covid-syndrome Coronavirus and M.E./CFS (Action for ME) www.actionforme.org.uk/living-with-me/coronavirus-and-me-cfs 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 Living with a condition (The Brain Charity)
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
News and Events
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 Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19 Living with a condition (The Brain Charity)
News and events	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	Complex Regional Pain Syndrome in Children (Stop Childhood Pain, U.S.) https://stopchildhoodpain.org/crps
New and events
Online resources	Coronavirus (COVID-19) and CRPS (Burning Nights) www.burningnightscrps.org/novel-coronavirus-covid-19-and-crps 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 Living with a condition (The Brain Charity)
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 Living with a condition (The Brain Charity)
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.

Dementia

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 Society website
Useful national contacts	Dementia UK Provides mental health nurses specialising in dementia care, called Admiral Nurses. www.dementiauk.org Tel. 020 7697 4160 Admiral Nurses www.dementiauk.org/what-we-do/admiral-nurses Young Dementia UK www.youngdementiauk.org Lewy Body Society http://lewybody.org Tel. 0131 473 2385 Alzheimer's Society (covers England, Wales, N. Ireland) www.alzheimers.org.uk Helpline: 0845 300 0336 Alzheimer's Society: Carer Information and Support Programme (CrISP) https://tinyurl.com/y89h96xa Alzheimer Scotland (covers Scotland) www.alzscot.org Helpline: 0808 808 3000 Huntingdon's Disease Association www.hda.org.uk Tel. 0151 331 5444 Parkinson's UK www.parkinsons.org.uk Tel: 0808 800 0303 Stroke Association www.stroke.org.uk Tel. 0303 3033 100
Children & young people	Explaining dementia to children and young people (Alzheimer's Society) https://tinyurl.com/y4bcceg4 Resources for Children and Young People (Dementia UK) www.dementiauk.org/children-and-young-people
Online resources	• Effect of coronavirus on people living with dementia (The Brain Charity) Coronavirus: Support for a person with dementia living alone (Alzheimer's Society) www.alzheimers.org.uk/get-support/coronavirus-support-person-dementia-living-alone#content-start Coronavirus: Information for people affected by dementia (Alzheimer's Society) Coronavirus: Information for people affected by dementia Should a person with dementia wear a face mask for coronavirus? (Alzheimer's Society) www.alzheimers.org.uk/blog/should-person-dementia-wear-face-mask-coronavirus Alzheimer's Society - The Dementia Guide (YouTube) http://youtu.be/RLBuygIcttU Making your home dementia friendly (Alzheimer's Society) https://tinyurl.com/yajevnxq Dementia within African Carribean communities (Dementia UK) www.dementiauk.org/dementia-within-african-caribbean-communities Your unforgettable friend: a dementia-friendly activity booklet brought to you by Puzzler and The People’s Friend Living with a condition (The Brain Charity)
News and events
Our resources	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 look in your local library for this book.

Devic's Disease

Name	Devic's Disease
	See Neuromyelitis Optica (N.M.O.)

Down's Syndrome

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 https://tinyurl.com/cy8q7ad
Useful national contacts	Down's Syndrome Association Helpline: 0333 1212 300 www.downs-syndrome.org.uk Find your local support group: https://tinyurl.com/yahn8r42 Down's Syndrome Scotland Phone: 0131 442 8840 www.dsscotland.org.uk Down's Heart Group Phone: 0300 102 1644 www.dhg.org.uk Mencap charity for people with a learning disability Helpline 0808 808 1111 www.mencap.org.uk Find your local support group: www.mencap.org.uk/search/groups
Children & young people	New Parent Pack (Down's Syndrome Association) https://tinyurl.com/y8t2a4bn
News and events
Online resources	Easy-Read guide to Coronavirus from Mencap Coronavirus (COVID-19) (Down's Syndrome Association) www.downs-syndrome.org.uk/coronavirus-covid-19 COVID-19: Supporting autistic people and people with learning disabilities (Social Care Institute for Excellence) Down's syndrome (NHS Choices) https://tinyurl.com/cy8q7ad Down syndrome (Contact, charity for families with disabled children) 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) https://tinyurl.com/ur6krnp Improving our Support for People from Black, Asian and Ethnic Minority Backgrounds (Down's Syndrome Association) www.downs-syndrome.org.uk/news/improving-our-support-for-people-from-black-asian-and-ethnic-minority-backgrounds Living with a condition (The Brain Charity)
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.

Dysautonomia

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) www.jnetics.org Email: This email address is being protected from spambots. You need JavaScript enabled to view it. UK Potsies www.ukpotsies.org.uk Dysautonomia International www.dysautonomiainternational.org
Childen & young people	Living a Life With Dysautonomia in Children (Dysautonomia POTS Syndrome website) https://tinyurl.com/y3ua6jps Brain injury - Dysautonomia (Kids Health Info, Royal Children's Hospital Melbourne) https://tinyurl.com/y4rrvdul
News and events	"Camilla sees benefits of medical alert dogs on charity visit" (Wolverhampton Express and Star, February 20, 2019) https://tinyurl.com/y5h6su29
Online resources	Coronavirus & Dysautonomia (Dysautonomia International) www.dysautonomiainternational.org/page.php?ID=227 Coronavirus and diabetes (Diabetes UK) www.diabetes.org.uk/about_us/news/coronavirus?utm_source=google%2C%20covid-19&utm_medium=Banner&utm_campaign=banner_covid-19&utm_content=banner_link Familial Dysautonomia (Contact, charity for familiies with disabled children) https://tinyurl.com/sgy9sbh Autonomic Neuropathy (Diabetes.co.uk) http://tinyurl.com/y4hy3g4k Postural tachycardia syndrome (PoTS) (NHS website) https://tinyurl.com/ycxju2b9 Dysautonomia Information Page (U.S. National Institute of Neurological Disorders and Stroke) http://tinyurl.com/y499zwts Dysautonomia, Familial (U.S. National Organization for Rare Disorders) http://tinyurl.com/yyuajgvm Living with a condition (The Brain Charity)
Our resources	The library at the Brain Charity has a range of resources on Dysautonomia and on a wide range of disability-related issues.

Dyscalculia

Name	Dyscalculia
Related to/Also known as	Dyslexia ADHD Mathematics Learning Difficulty
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 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 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 www.bdadyslexia.org.uk Scope Helpline: 0808 800 3333 www.scope.org.uk Find your local support services: 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) https://tinyurl.com/yzsm27am
Online resources	The Dyscalculia Information Centre www.dyscalculia.me.uk What is Dyscalculia? (East Midlands Dyslexia Association) https://tinyurl.com/yaz566nn Dyscalculia (Contact, charity for families with disabled children) https://tinyurl.com/tllvrqj What is Dyscalculia? (Dyslexia Association) https://tinyurl.com/yyqojnlf Dyscalculia (Judy Hornigold) http://judyhornigold.co.uk/dyscalculia.html Living with a condition (The Brain Charity)
News and events
Our resources	The library at the Brain Charity has a wide range of resources on disability-related issues.

Dyslexia

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 www.bdadyslexia.org.uk Dyslexia Action Tel. 01784 222300 www.dyslexiaaction.org.uk Dyslexia Foundation Tel. 0151 709 0545 https://dyslexiafoundation.org Dyslexia-SplD Trust www.thedyslexia-spldtrust.org.uk
Children & young people	My child's education (British Dyslexia Association) https://tinyurl.com/y6nq89zf
Online resources	Dyslexia (Contact, charity for families with disabled children) https://tinyurl.com/vtkzj Dyslexia - Symptoms (NHS website) 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 https://tinyurl.com/y8fzg7je How to support a pupil with dyslexia (Engage Education) https://tinyurl.com/qv8zk52 Living with a condition (The Brain Charity)
News and events	October 5th-11th 2020 is Dyslexia Week www.bdadyslexia.org.uk/support-us/awareness-events/dyslexia-awareness-week/dyslexia-week-2020
Our resources	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.

Dysphasia

Name	Dysphasia
	see Aphasia

Dyspraxia

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 www.dyspraxiafoundation.org.uk
Children & young people	Blossom's story - The Brain Changer Arts Project has her 'dancing with joy' Dyspraxia in children (Dyspraxia Foundation) https://tinyurl.com/yxnyl2yp Developmental co-ordination disorder in children ('Patient' website) https://tinyurl.com/yyp9w8dd Children with verbal dyspraxia (The Communication Trust) https://tinyurl.com/y62m5ovb
Online resources	Neurodiversity and Co-occurring differences: Dyspraxia (DCD) (British Dyslexia Associarton) https://tinyurl.com/yxnczlp2 Dyspraxia (developmental co-ordination disorder) in adults (NHS website) https://tinyurl.com/y43dq8c3 Living with a condition (The Brain Charity)
News and events	Survey: Treatment of Childhood Neurological Conditions (British Paediatric Neurology Association, September 2020) https://www.surveymonkey.co.uk/r/BPNA_JLA_RESEARCH_PSP 'How Doctor Who tackles dyspraxia in series 11' (Radio Times, October 2018) https://tinyurl.com/ybmgdcvz
Our resources	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 look in your local library for this book.

Dystonia

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 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) https://www.dystonia.org.uk/children-and-dystonia
Online resources	Coronavirus and Dystonia (The Dystonia Society) www.dystonia.org.uk/news/coronavirus-dystonia Dystonia (NHS website) www.nhs.uk/conditions/dystonia Dystonia and Parkinson's disease (Dystonia Society) https://tinyurl.com/yyo2pot8 Living with a condition (The Brain Charity)
News and events	Sign Joanne's petition: Dystonia needs to be recognised by all medical professions & occupational therapists https://tinyurl.com/y9y6d6pv
Our resources	The 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.

Ekbom's Syndrome

Name	Ekbom's Syndrome
	See Restless Legs Syndrome

Encephalitis

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 www.encephalitis.info
Children & young people	Encephalitis in children: E-learning (Encephalitis Society) 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) ww.bbc.co.uk/news/health-50206382
Online resources	Living with a condition (The Brain Charity)
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. Visit our library to read our copy of the children's book Gilley the Giraffe... who Changed by Nimmi Channa and Phil Lynch.

Epilepsy

Name	Epilepsy
Related to/Also known as
Symptoms of Epilepsy	Epilepsy is the tendency to have recurrent seizures, which tend to recur spontaneously. These seizures occur when there is an electrical disturbance in the brain, and the signals it sends to the body become mixed up, rather like an electrical storm in the brain.
Types	There are many different types of seizure, usually divided into two categories - generalised or partial. Typically a seizure may last from a few seconds to a few minutes. Partial seizure - affects only part of the brain. Consciousness is not lost in a simple partial seizure; consciousness is impaired in a complex partial seizure. Generalised seizures affect the whole brain, and often involve a loss of consciousness. They include the Tonic Clonic seizure where the person falls down, and their body stiffens and shakes; the Atonic seizure where the body goes floppy rather than stiff; the Absence seizure, which usually shows itself in a blank stare lasting a few seconds; the Myoclonic seizure, which is very brief and involves a muscle jerk.
Useful national contacts	Epilepsy Action Helpline: 0808 800 5050 www.epilepsy.org.uk Find local branches and groups: www.epilepsy.org.uk/involved/branches Virtual groups meet every week for a chat • Epilepsy Action meets at The Brain Charity on the last Thursday of the month Epilepsy Society Helpline: 01494 601400 www.epilepsysociety.org.uk David Lewis Centre For Epilepsy Tel. 01565 640000 www.davidlewis.org.uk Seizure Alert Dogs https://tinyurl.com/ybdbt Mersey Regional Epilepsy Association Helpline 0151 298 2666 www.epilepsymersey.org.uk SUDEP Action (Sudden Unexpected Death in Epilepsy) http://sudep.org Tel. 01235 772850
Children & young people	Information about COVID-19 (coronavirus) for young people with epilepsy.(Young Epilepsy) www.youngepilepsy.org.uk/covid-19-information.html Young Epilepsy Provides information and support for young people, and for parents and carers Helpline: 01342 831 342 Email: This email address is being protected from spambots. You need JavaScript enabled to view it. www.youngepilepsy.org.uk Epilepsy Action: Just for kids Epilepsy info for kids www.epilepsy.org.uk/info/children The Daisy Garland - charity offering help and support for children wirh drug-resistant epilepsy www.thedaisygarland.org.uk
Online resources	Coronavirus (COVID-19) and epilepsy (Epilepsy Action) www.epilepsy.org.uk/info/daily-life/safety/coronavirus-covid-19 Wearing a face mask with epilepsy (Epilepsy Society) www.epilepsysociety.org.uk/news/wearing-face-mask-epilepsy Guide to Epilepsy and PIP (The Brain Charity) • Guide to Epilepsy and PIP What to do when someone has a seizure (Epilepsy Action) https://tinyurl.com/y9ky4up2 6 absence seizures caught on camera, on YouTube www.youtube.com/watch?v=PQfVUOBjttk&feature=youtu.be First Aid for seizures - Epilepsy Action video (YouTube) EpSMon - award-winning self-monitoring App designed for adults who experience seizure www.epsmon.com Free e-learning resources from Epilepsy Action http://learn.epilepsy.org.uk You may be entitled to free or discounted travel if your seizures mean you can’t have a driving licence (Epilepsy Society) https://tinyurl.com/ycl743wc EasyRead: Epilepsy (EasyHealth) www.easyhealth.org.uk/index.php/12-common-health-conditions/epilepsy Living with a condition (The Brain Charity)
News and events	Nikkita Otu has severe epilepsy. Sign the petition to help Nikkita get the care he needs (2019) www.change.org/p/merton-borough-council-help-me-get-the-social-care-i-need-to-live "Husband programmes smartwatch to detect wife's seizures" (Epilepsy Society, January 2016) https://tinyurl.com/ycfd8f2q
Our resources	The library at The Brain Charity has a range of resources on Epilepsy and on a wide range of disability-related issues. Visit our library to read What's up with Wendy? MediKidz explain epilepsy.

Essential Tremor

Name	Essential Tremor
Related to/Also known as
Symptoms of Essential Tremor	Essential Tremor is a neurological disorder, in which patients have a rhythmic trembling of one or more hands, head, legs, trunk and voice. The tremor is more visible during movement than at rest.
Types
Useful national contacts	National Tremor Foundation www.tremor.org.uk Helpline: 01708 386399 Find your local support group: www.tremor.org.uk/support-groups.html • The North West Essential Tremor Group meets at The Brain Charity's Coffee Morning
Children & young people	Essential Tremor in Children (National Tremor Foundation) https://tremor.org.uk/et-in-children.html
News and Events
Online resources	Coronavirus advice (National Tremor Foundation) https://tremor.org.uk/coronavirus-advice.html Essential tremor (NHS Choices) https://tinyurl.com/y7j8w78a International Essential Tremor Foundation www.essentialtremor.org Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Essential Tremor and on a wide range of disability-related issues. Visit our library to read Essential Tremor: The facts by Dr Mark Plumb and Dr Peter Bain. Or have a look in your local library for this book.

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