Name Fibromyalgia
Related to/Also known as Myofascial pain syndrome
Symptoms of Fibromyalgia
Fibromyalgia means "pain coming from the muscles and fibrous tissues" (such as tendons and ligaments), and the condition is characterised by muscle aches and pains. Other symptoms often include fatigue, sleep disturbance and headache.
Types  
Useful national contacts Fibromyalgia Action UK
Helpline: 0844 887 2444, 10am-4pm, Mon-Fri
Link opens in new window www.fmauk.org
Find your local support group: Link opens in new window www.fmauk.org/contactsmenu/supportgroups

UK Fibromyalgia
Tel. 01202 259155
Link opens in new window www.ukfibromyalgia.com
Online resources NHS Choices: Fibromyalgia
Link opens in new window https://tinyurl.com/ya6jsvm7

NHS Choices video: Fibromyalgia: Suzanne's Story
Link opens in new window www.nhs.uk/video/pages/fibromyalgia.aspx
Cochrane Evidence: Acupuncture for fibromyalgia
Link opens in new window https://tinyurl.com/ycl95eff
Cochrane Evidence: Exercise for fibromyalgia
Link opens in new window https://tinyurl.com/y9oo52ed

"Exercise 'beneficial' for easing fibromyalgia-related fatigue" (Arthritis Research UK)
Link opens in new window https://tinyurl.com/yanwt24n

Fibromyalgia Forum (The Fibromyalgia Magazine)
Link opens in new window http://bit.ly/1fOjBNg
Centers for Disease Control (U.S.): Fibromyalgia
Link opens in new window https://tinyurl.com/2br7hjl
Our resources

Living with fibromyalgiaThe library at The Brain Charity has a range of resources on Fibromyalgia and on a wide range of disability-related issues.

Visit our library to read Living with Fibromyalgia by Christine Craggs-Hinton. 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 Fragile X Syndrome
Related to/Also known as  see also Autism
Symptoms of Fragile X Syndrome

"[Fragile X] is the most common cause of inherited learning disability. It affects boys and girls and causes a wide range of problems with learning and behaviour, from mild to severe. Boys are usually more seriously affected than girls. FXS is caused by an alteration in a particular gene that lies on the X chromosome."

Source: St George's Healthcare NHS Trust
Link opens in new window https://tinyurl.com/ybjrg2e2

Types  
Useful national contacts The Fragile X Society
Tel: 01371 875 100
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Website: Link opens in new window www.fragilex.org.uk
Mencap
Helpline 0808 808 1111
Link opens in new window www.mencap.org.uk
News and events  
Online resources What is Fragile X syndrome? (The National Autistic Society)
Link opens in new window https://tinyurl.com/y7ghb9uy

Fragile X syndrome (Contact a Family)
Link opens in new window https://tinyurl.com/yb8sdk6
Fragile X syndrome (Mencap)
Link opens in new window https://tinyurl.com/ybcy67e8

Our resources

Understanding Fragile X Syndrome The library at The Brain Charity has a range of resources on Fibromyalgia and on a wide range of disability-related issues.

Visit our library to read Understanding Fragile X Syndrome: A Guide for Families and Professionals by Isabel Fernández Carvajal.

Name Fronto-temporal Dementia (FTD)
Related to/Also known as includes:
Behavioural Variant Frontotemporal Dementia (including Pick's Disease)
Primary Progressive Aphasia
Alcohol-Related Dementias
Symptoms of Fronto-temporal Dementia

Fronto-temporal dementias include Pick's Disease. These dementias commonly affect people of working age.

The disease is difficult to diagnose because the sufferer is younger than expected, and displays different symptoms. Diagnosis takes up to three years.

Types  
Useful national contacts Frontotemporal Dementia Support Group
Telephone:  Jill Walton 07592 540555
Website: Link opens in new window www.ftdsg.org
News and events  
Online resources

Frontotemporal dementia - Diagnosis (NHS Choices)
Link opens in new window https://tinyurl.com/yd4sa8fd

Alcohol-Related Brain Damage (Alcohol Concern)
Link opens in new window www.alcoholconcern.org.uk/arbd

Our resources What If It's Not Alzheimer's?: A caregiver's guide to dementia

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

Visit our library to read our copy of the book What if it's not Alzheimer's? : a caregiver's guide to dementia by Gary Radin and Lisa Radin. 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 Functional Neurological Disorder (F.N.D.)
Related to/Also known as Functional Movement Disorders
NEAD (Non-Epileptic Attack Disorder)
Symptoms of Functional Neurological Disorder

"Approximately one-sixth of all patients seen by the neurology service will receive a diagnosis of functional neurological symptoms. This condition is also called 'medically unexplained neurological symptoms'.

"This common condition covers a range of symptoms but most often people experience changes in their ability to move and feel their limbs. People may experience difficulty with walking, balance, problems controlling and moving arms and legs, and experience odd or unpleasant sensations in the body like tingling or pain. Symptoms may fluctuate or be there most of the time causing a lot of distress.

"The difference between functional neurological symptoms and other neurological conditions such as “multiple sclerosis” or “Parkinson’s disease” is that functional neurological symptoms are not caused by structural disease of the nervous system (brain, spine and nerves). The structure of the body is still well and has no damage but the function of it is not working."

Source: Link opens in new window NHS Greater Glagow and Clyde

Types  
Useful national contacts

FND Action
registered charity
c/o Involve Kent, 39-48 Marsham Street
Maidstone, Kent ME14 1HH
Link opens in new window www.fndaction.org.uk
email This email address is being protected from spambots. You need JavaScript enabled to view it.
Find your local support group: Link opens in new window www.fndaction.org.uk/useful-links/#


FND Hope UK
registered charity, part of international FND Hope
21 Chetwode, Banbury, Oxon, OX16 1QN
Link opens in new window https://fndhope.org.uk

News and events   
Online resources

Functional Neurological Disorder (FND):  a patient's guide
Link opens in new window https://tinyurl.com/y8xrlyzg

Functional Neurological Disorders [includes'What are functional seizures?'], NHS Sheffield Teaching Hospitals website)
Link opens in new window https://tinyurl.com/y8vck5ey

f.n.d. magazine FND Magazine: online quarterly magagzine of FND Hope
Link opens in new window https://tinyurl.com/y9pq4ecy

Functional Neurological Disorder (Patient UK website)
Link opens in new window https://patient.info/health/functional-neurological-disorder

Functional Neurological Disorder (U.S. National Organization for Rare Disorders)
Link opens in new window https://rarediseases.org/rare-diseases/fnd

Stepped care for functional neurological symptoms: A new approach to improving outcomes for a common neurological problem in Scotland (Health Improvement Scotland website)
Link opens in new window https://tinyurl.com/ybw63rms

Our resources The library at The Brain Charity has a range of resources on Functional Neurological Disorder and on a wide range of disability-related issues.

Name Guillain-Barré Syndrome (GBS)
Related to/Also known as Acute Inflammatory Demyelinating Polyneuropathy (AIDP)

Landry-Guillain-Barré Syndrome

Symptoms  of GBS
GBS is an inflammatory disorder of the peripheral nerves - those outside the brain and spinal cord. It is characterised by the rapid onset of muscle weakness and loss of sensation, and in serious cases can lead to paralysis of the legs, arms, breathing muscles and face. Recovery usually begins within 2-3 weeks, and only a minority of cases have long-lasting problems.
Types CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) is a similar, but longer lasting condition.
Useful national contacts Gain (Guillain-Barré & Associated Inflammatory Neuropathies)
Link opens in new window www.gaincharity.org.uk
Helpline:  0800 374 803
News and events Statement from MHRA on flu vaccinations (December 2018)
"Suggestions that flu vaccines may cause GBS can be pinpointed to a very specific type of vaccine given to patients in the USA in 1976. The vaccine was not used in any other countries and a theory was that this risk was due to a contaminant in that particular type of vaccine."
Link opens in new window https://tinyurl.com/ybb5kkn7
Online resources Guillain-Barré Syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/y7jbce8k

Guillain-Barré Syndrome (Facial Palsy UK)
Link opens in new window https://tinyurl.com/ybzlnzlb


Guillain-Barré syndrome (Contact a Family)
Link opens in new window https://tinyurl.com/y85cwxmc/
Our resources No Time for Tears: Turning Tragedy into Triumph

The library at The Brain Charity has a range of resources on Guillain-Barré Syndrome (GBS) and on a wide range of disability-related issues.

Visit our library to read No Time for Tears: Turning Tragedy into Triumph by Dorris R. Wilcox, or pick up one of our copies of the GAIN charity's leaflets.

Name Hemiplegia
Related to/Also known as Alternating hemiplegia
Hemiplegic migraine
Symptoms of Hemiplegia

Hemiplegia is a condition, the effects of which are similar to a stroke. It is caused by damage to the brain (most often before or around the time of birth) and it results in a varying degree of weakness and lack of control on one side of the body.  In one child this may be very obvious (he or she may have little use of one hand, may limp or have poor balance); in another child it will be so slight that it only shows when attempting specific physical activities.

Approximately half the children have additional diagnoses such as epilepsy, visual impairment or speech difficulties. Other challenges can include perceptual problems, specific learning difficulties or emotional and behavioural problems.

Types  
Useful national contacts HemiHelp
Link opens in new window www.hemihelp.org.uk
helpline: 0845 123 2372
Eplilepsy Society
Link opens in new window www.epilepsysociety.org.uk
helpline: 01494 601 400
Stroke Association
Link opens in new window www.stroke.org.uk
phone: 033 3033 100
UK Children's Neurological Research Association
Link opens in new window www.ukcnrc.org.uk
News and events  
Online resources What is hemiplegia? An animated film (YouTube video by HemiHelp)
Link opens in new window https://tinyurl.com/y72hnau2
Our resources The library at The Brain Charity has a range of resources on Hemiplegia and on a wide range of disability-related issues.

Name Hereditary Spastic Paraplegia (HSP)
Related to/Also known as Familial Spastic Paraplegia (FSP)
Symptoms of HSP
A group of inherited disorders, which are characterised by progressive weakness and stiffness of the legs.
Types  
Useful national contacts HSP Support Group
Helpline: 01702 218184
Link opens in new window www.hspgroup.org
Online resources Hereditary spastic paraplegia (NHS Choices)
Link opens in new window https://tinyurl.com/y7fexyyl
Familial Spastic Paraplegia (Contact A Family)
Link opens in new window https://tinyurl.com/ych5octo
News and events

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

Our resources The library at The Brain Charity has a range of resources on Hereditary Spastic Paraplegia (HSP) and on a wide range of disability-related issues.

Name Huntington's Disease (HD)
Related to/Also known as Huntington's Chorea (HC)
Symptoms of Huntington's Disease

An hereditary, neurodegenerative disorder of the central nervous system, which causes emotional, intellectual and movement problems. The course of Huntington's is characterised by involuntary movement of the limbs, trunk, and face, progressive loss of mental abilities, and the development of psychiatric problems.

Huntington's Disease usually appears in middle age (30-50 years), but can develop in younger and older people.

Types Juvenile HD refers to anyone who develops symptoms of the disease before the age of 20. Those affected often experience more muscle rigidity than when developed in adulthood.
Useful national contacts Huntington's Disease Association
Suite 24
Liverpool Science Park
Innovation Centre 1
131 Mount Pleasant
Liverpool L3 5TF
Tel. 0151 331 5444
Link opens in new window www.hda.org.uk
Find your local branch:
Link opens in new window http://hda.org.uk/hda/branches
Email This email address is being protected from spambots. You need JavaScript enabled to view it.
Scottish Huntington's Association
Link opens in new window www.hdscotland.org
News and events  
Online resources Huntington's disease (NHS Choices)
Link opens in new window https://tinyurl.com/y8zc4z5q
Our resources Learning to live with Huntington's disease

The library at The Brain Charity has a range of resources on Huntington's Disease and on a wide range of disability-related issues.

Visit our library to read Learning to Live with Huntington's Disease: One Family's Story by Sandy Sulaiman. 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 Hydrocephalus
Related to/Also known as Spina Bifida
Symptoms of Hydrocephalus
Hydrocephalus is caused by a build up of cerebro-spinal fluid (CSF) in the ventricles of the brain. It can occur in association with Spina Bifida. Other causes include infections such as meningitis, premature birth, a head injury or a stroke. Hydrocephalus can lead to problems with skills such as concentration, short-term memory, organisation and co-ordination.
Types  
Useful national contacts Shine (formerly ASBAH, the Association for Spina Bifida and Hydrocephalus)
Link opens in new window www.shinecharity.org.uk
Helpline: 01733 555988
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
Online resources Spina bifida (NHS Choices)
Link opens in new window https://tinyurl.com/yd9ehdfa

Hydrocephalus (NHS Choices)
Link opens in new window https://tinyurl.com/yahppdkd
Our resources The library at The Brain Charity has a range of resources on Hydrocephalus and on a wide range of disability-related issues.

Name Idiopathic Intracranial Hypertension (IIH)
Related to/Also known as Benign Intracranial Hypertension (BIH)

Pseudotumor Cerebri (PTC)

Symptoms of I.I.H.

Idiopathic Intracranial Hypertension (I.I.H.) is a condition that is defined by increased intracranial pressure from increased blood flow to the blood vessels around the brain, but without the presence of tumour or disease. Often the sheath around the optic nerve (the nerve to the eyes) is swollen, which can cause sight problems and even blindness. 

It is also known as Pseudotumor Cerebri (PTC), because some sufferers present with signs and symptoms of a brain tumour despite no tumour being present ('pseudo' meaning false).

Types  
Useful national contacts IIH UK
Link opens in new window www.iih.org.uk
64a Broadsands Drive
Gosport
Hants. PO12 2SD
Find support near you: Link opens in new window https://tinyurl.com/y9pmj574


I Have IIH Foundation
Link opens in new window www.ihaveiih.com
Blind Children UK
Link opens in new window www.blindchildrenuk.org
Support Line:  0800 781 1444
Email:  This email address is being protected from spambots. You need JavaScript enabled to view it.
Online resources IIH UK Patient Leaflet
Link opens in new window www.iih.org.uk/images/PatientLeaflet.pdf

IIH International Support Forum
Link opens in new window www.iihsupport.org/


Idiopathic Intercranial Hypertension (NHS Choices)
Link opens in new window https://tinyurl.com/yb95osc2

Our resources

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

Journal of Neurology, Neurosurgery and Psychiatry This includes a copy of the Journal of Neurology, Neurosurgery and Psychiatry article "Idiopathic Intracranial Hypertension: Consensus guidelines on management".

Name Landau-Kleffner Syndrome
Related to/Also known as Acquired Epileptic Aphasia
Symptoms of Landau-Kleffner Syndrome
Landau-Kleffner Syndrome is a rare form of epilepsy that affects only children. It is characterised by severe language problems (aphasia). Symptoms may also include seizures.
Types  
Useful national contacts

Contact A Family
Freephone helpline (UK only): 0808 808 3555
Link opens in new window cafamily.org.uk

Cerebra, UK charity for children with neurological conditions
Link opens in new window http://w3.cerebra.org.uk
Telephone 01267 244200
Email This email address is being protected from spambots. You need JavaScript enabled to view it.
Find your local support:
Link opens in new window https://tinyurl.com/ycl8djhy

Online resources

Landau Kleffner Syndrome (Epilepsy Action)
Link opens in new window https://tinyurl.com/ybkll5cy

Landau-Kleffner Syndrome Information Page (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/b5hu4

Our resources The library at The Brain Charity has a range of resources on Landau Kleffner Syndrome and on a wide range of disability-related issues.

Name Leigh Syndrome
Related to/Also known as  
  • Leigh's Disease
  • Leigh's Syndrome
  • Necrotizing encephalopathy
  • Subacute Necrotizing Encephalomyelopathy (SNEM)
  • Mitochondrial disease

see also Rare Conditions

Symptoms of Leigh Syndrome

Leigh Syndrome is a rare, inherited, early-onset degenerative disorder with many different symptoms.

This is a disease of the mitochondria, which provide energy for nerve cells in the brain and muscles.

Types X-linked Leigh Disease
Useful national contacts The Leigh Network (Facebook)
Link opens in new window https://tinyurl.com/yaeud4ec


Climb (Children Living with Inherited Metabolic Diseases)
Link opens in new window www.climb.org.uk
Freephone 0800 652 3181
The Rare Mitochondrial Disease Service for Adults and Children (NHS)
Link opens in new window www.mitochondrialncg.nhs.uk
News and events  
Online resources Leigh's Disease Information Page (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/ybh4rabh
Our resources The library at The Brain Charity has a range of resources on Leigh's Disease and on a wide range of disability-related issues.

Name Leukodystrophy
Related to/Also known as Adrenoleukodystrophy (ALD)

Lorenzo's Oil disease

Symptoms of Leukodystrohy
The Leukodystrophies are a group of genetic disorders, which are generally diagnosed in childhood. Caused by a breakdown of the myelin sheath surrounding nerve cells in the brain. There are several forms, and the most common symptoms are a slowdown in mental and physical development
Types Metachromatic leukodystrohy
Refsum's disease
Adrenoleukodysrophy
Krabbe's disease
Phenylketonuria
Canavan disease
Pelizaeus-Merzbacher disease
Alexander's disease
Cerebrotendinous Zxanthomatosis (CTX)
Juvenile HD (also called Westphal variant or akinetic-rigid HD) develops before the age of 20, progresses rapidly, and produces muscle rigidity in which the patient moves little, if at all (akinesia).
Useful national contacts Climb National Information Centre for Metabolic Diseases
Link opens in new window www.climb.org.uk
Tel: 0800 652 3181 (Open 10am - 4pm)
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Online resources

Leukodystrophy Information Page (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/ybwu5mys

Our resources

Living with MLD (Metachromatic Leukodystrophy) The library at The Brain Charity has a range of resources on Leukodystrohy and on a wide range of disability-related issues.

Visit our library or get in touch to read the MLD Support Association's booklet "Living with MLD".

Name  Lissencephaly
Related to/Also known as  
Symptoms of Lissencephaly
Lissencephaly is used as an 'umbrella' term to describe a range of disorders where the whole or parts of the surface of the brain appear smooth.
Types Classical Lissencephaly

Cobblestone Lissencephaly

Useful national contacts Lissencephaly Contact Group
c/o Contact a Family
Web Link opens in new window www.cafamily.org.uk
Tel. 0808 808 3555
Online resources Lissencephaly Information page (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/ybtzgw4j
Our resources The library at The Brain Charity has a range of  resources on Lissencephaly and on a wide range of disability-related issues.

Name Lyme Disease
Related to/Also known as Borreliosis
Symptoms of Lyme Disease

Lyme Disease is an infectious disease caused by the bacterium Borrelia Burgdorferi. The disease is transmitted to humans by the bite of an infected tick.

If left untreated it can affect the skin, heart, nervous system and joints.

Types  
Useful national contacts Lyme Disease Action
Link opens in new window www.lymediseaseaction.org.uk
Online resources Lyme disease (NHS Choices)
Link opens in new window https://tinyurl.com/y8dram83
Lyme disease (Facial Palsy UK)
Link opens in new window https://tinyurl.com/y9rkwv3y
UK Tick Threat Map (The Big Tick Project)
Link opens in new window https://tinyurl.com/ycx48khu
News and events "Ignorance of tick-borne Lyme disease 'costing lives'" (BBC News, May 2013)
Link opens in new window www.bbc.co.uk/news/health-22468181
Our resources Ticks and Lyme Disease The library at The Brain Charity has a range of resources on Lyme Disease and on a wide range of disability-related issues. This includes copies of the Lyme Disease Association's pamphlet "Ticks and Lyme Disease".

Name Ménière's Disease (MD)
Related to/Also known as Idiopathic Endolymphatic Hydrops
Symptoms of Ménière's Disease Ménière's Disease (MD) is a disorder of the inner ear, characterised by vertigo, tinnitus and hearing loss. Ménière's Disease is a long term, progressive disease which damages both the balance and hearing parts of the inner ear.
Types  
Useful national contacts Ménière's Society
Link opens in new window www.menieres.org.uk
Helpline: 0845 120 2975
Find your local support group:
Link opens in new window https://tinyurl.com/y9jlvech
News and events Volunteers wanted for Ménière's Disease Clinical Research Study (April 2017)

Link opens in new window www.menieresstudy.uk

Online resources

Ménière's Disease (NHS Choices website)
Link opens in new window https://tinyurl.com/y7lbxl6p

Ménière's Disease (Patient.info)
Link opens in new window https://tinyurl.com/ybq5xb24

Our resources

The library at The Brain Charity has a range of resources on Ménière's Disease and on a wide range of disability-related issues.

This includes a copy of the Brain & Spine Foundation's booklet "Dizziness And Balance Problems: A guide for patients and carers".

Name Meningitis
Related to/Also known as Meningococcal disease

Septicaemia

Symptoms of Meningitis

Meningitis is an inflammation of the lining (meninges) which covers the spinal cord and the brain.

Common symptoms are usually high fever, headache, stiff neck and a red/purple rash which remains when pressed and looked at through a glass tumbler.

Types

Meningitis is usually caused by a bacterial or viral infection, or is occasionally due to a fungal infection.

Viral meningitis can be very unpleasant, but is generally less severe and is usually without long-term effects.

Bacterial meningitis is more serious and, although some do make a full recovery, others may be left with problems such as long-term brain damage, hearing loss and epilepsy.

The meningococcal bacterium that causes meningitis can also cause septicaemia (blood poisoning). If a patient has some symptoms of both meningococcal meningitis and meningococcal septicaemia, then together these two forms of the disease are known as meningococcal disease.

Useful national contacts Meningitis Trust and Meningitis Research Foundation have merged to form
Meningitis Now
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Link opens in new window www.meningitisnow.org
Nurse-staffed Freefone Helpline 0808 80 10 388
Online resources Meningitis Now free mobile app
Link opens in new window https://tinyurl.com/yaw5ku6k
Meningitis (NHS Choices)
Link opens in new window https://tinyurl.com/y77fpty7
Glass test for meningitis (Meningitis Now)
Link opens in new window https://tinyurl.com/zdt2ymo
News and events

Teenagers urged to take part in meningitis B vaccine trial (BBC, March 2018)
Link opens in new window www.bbc.co.uk/news/health-43554595

Men ACWY vaccine (NHS Choices)
Young teenagers and 'fresher' students going to university for the first time are advised to have a vaccination to prevent meningitis W disease.
Link opens in new window https://tinyurl.com/qh2b5me

"New meningitis vaccine for students and children" (BBC Wales, August 2015)
Link opens in new window www.bbc.co.uk/news/uk-wales-33734323

Our resources

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

This includes a copy of the Brain & Spine Foundation's booklet "Meningitis: A fact sheet for patients and carers".

Name  Microcephaly
Related to/Also known as  Microcephaly is a symptom of many different conditions.
Symptoms

"Microcephaly is a rare neurological condition in which a person's head is significantly smaller than expected based on standardized charts."

Source: U.S. National Institutes of Health, Genetic and Rare Diseases Information Center
Link opens in new window https://tinyurl.com/yctd33jc

Types
  • Primary: the brain fails to grow to the correct size during pregnancy
  • Secondary: the brain is the expected size at birth but subsequently fails to grow normally
Source: Current Opinion in Neurobiology 14(1) February 2004
Useful National contacts

Cerebra (charity for children with neurological conditions)
Link opens in new window http://w3.cerebra.org.uk
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Phone: 01267 244200
Post: 2nd Floor Offices, The Lyric Buildings, King Street, Carmarthen, SA31 1BD

Online resources 'Zika virus' (NHS Choices)
Link opens in new window https://tinyurl.com/hzvrcjp
Our resources The library at the Brain Charity has a range of resources on disability related issues.

Name Migraine
Related to/Also known as  
Symptoms of Migraine

Migraine is a debilitating neurological condition, which often strikes without warning. It affects different people in different ways, but common symptoms include an intense, throbbing headache (usually on one-side of the head), sensitivity to light and noise, nausea or vomiting. Visual disturbances, or aura, are also common.

see also Cluster Headaches

Types  
Useful national contacts

The Migraine Trust (Migraine Action has merged with the Migraine Trust)
Tel: 020 7631 6970
Link opens in new window www.migrainetrust.org


National Migraine Centre
Tel. 020 7251 3322
Link opens in new window www.migraineclinic.org.uk

Online resources Cochrane Evidence: Acupuncture for preventing migraine attacks
Link opens in new window https://tinyurl.com/ydxsos
Supporting pupils with medical conditions at school (Gov.uk)
Link opens in new window https://tinyurl.com/nrv8wxy
News and Events

 

Our resources Supporting young migraineurs

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

Visit our library to read Migraine Action's info pack "Supporting young migraineurs."

Name Motor Neurone Disease (MND)
Related to/Also known as Motor Neuron Disease
Amyotrophic Lateral Sclerosis (ALS)
Symptoms of Motor Neurone Disease
Motor Neurone Disease is an uncommon disease, which causes a progressive degeneration of the motor system (the nerve cells that controls the muscles). It is a slowly progressive disease, whose common systems include muscle wasting/weakness, muscle cramps and difficulty with swallowing and with speech.
Types Progressive Muscular Atrophy (PMA)

Progressive Bulbar Palsy
Primary Lateral Sclerosis
Familial MND (Familial ALS/FALS)
Juvenile ALS (MND)

Useful national contacts Motor Neurone Disease Assocation
Link opens in new window www.mndassociation.org
Helpline: 08457 626262 (local rate)
Find your local branch
Link opens in new window https://tinyurl.com/pxzujdo
Online resources

How can I check if my treatment and care are appropriate? (MND Association and NICE guidelines)
Link opens in new window https://tinyurl.com/ydchxhxx

Motor neurone disease (NHS Choices)
Link opens in new window https://tinyurl.com/ptmc38p


Motor neurone disease (Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/c4jpfbn


Motor neurone disease (Brain Research UK)
Link opens in new window https://tinyurl.com/ybodkg52

 

News and events The 100,000 Genomes Project is looking for people with Motor Neurone Disease for research into their DNA and genes

Link opens in new window www.genomicsengland.co.uk/taking-part

Trajectories of Outcome in Neurological Conditions (TONiC) study seeks volunteers
Link opens in new window https://tonic.thewaltoncentre.nhs.uk

Our resources Motor Neurone Disease: The At Your Fingertips Guide

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

This includes a copy of the book Motor Neurone Disease: The 'At your fingertips' Guide. Or have a look in your local library for this book.Find this in a library at WorldCat.org

Name Multiple Sclerosis (MS)
Related to/Also known as  
Symptoms of MS
Multiple Sclerosis is the most common disabling neurological disorder affecting young adults. MS occurs as the result of damage to myelin - the protective sheath surrounding nerve fibres of the central nervous system. This damage interferes with messages between the brain and other parts of the body.
Types
  • Relapsing remitting MS
  • Secondary progressive MS
  • Primary progressive MS
Useful national contacts MS Society
Helpline: 0808 800 8000
Link opens in new window www.mssociety.org.uk
Find your local support group:
Link opens in new window https://tinyurl.com/y8ksdy2j
MS Physical Activity Specialist:
Download this PDF for details

Multiple Sclerosis Trust
Tel. 01462 476700
Freephone information service 0800 032 3839
Link opens in new window www.mstrust.org.uk


MS-UK
Tel. 0800 783 0518
Link opens in new window www.ms-uk.org
You can call the MS-UK Helpline for free on 0800 783 0518 during weekdays, between 9 a.m. and 5 p.m.


Multiple Sclerosis National Therapy Centres
There are more than 50 centres in Britain and Ireland, including the Neuro Therapy Centre in Cheshire.
Link opens in new window www.msntc.org.uk and
Link opens in new window www.neurotherapycentre.org

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

Online resources MS Trust: Newly diagnosed with Multiple Sclerosis
Link opens in new window https://tinyurl.com/ybow2j8r
Physiotherapy works: Multiple Sclerosis (MS) (Chartered Society of Physiotherapists factsheet)
Link opens in new window https://tinyurl.com/ya73x7n9

MS-UK Live Webchat
Link opens in new window www.ms-uk.org/livewebchat


NHS Choices: Multiple Sclerosis
Link opens in new window https://tinyurl.com/ybdgn4uq


NHS Videos: Being diagnosed with multiple sclerosis
Link opens in new window https://tinyurl.com/y7tqpqbv


BBC: What is multiple sclerosis?
Link opens in new window http://www.bbc.co.uk/newsbeat/18490516


MS-UK video 'We're here if you need us'
Link opens in new window www.youtube.com/watch?v=IWdXloSD8gs


MediKidz explain Multiple Sclerosis
Link opens in new window https://tinyurl.com/y7vaf85f


MS Research Treatment and Education charity
Link opens in new window www.ms-research.org.uk


MS Register
A ground-breaking study designed to increase our understanding of living with MS in the UK
Link opens in new window www.ukmsregister.org

News and events

New MS Physical Activity Specialist service delivered by the MS Society and supported by Sport England (November 2018)
Download the PDF for details

Medical cannabis products available on prescription (BBC, November 2018)
Link opens in new window www.bbc.co.uk/news/health-46045487

'Game changer' treatment for Multiple Sclerosis patients (BBC, March 2018)
Link opens in new window https://tinyurl.com/y79vp8ya

Emerging areas of research: Stem cells (MS Society)
Link opens in new window https://tinyurl.com/y7fktbav



Our resources

Managing your Multiple Sclerosis The library at The Brain Charity has a range of resources on MS and on a wide range of disability-related issues.

Visit our library to read Managing your Multiple Sclerosis: Practical advice to help you manage your multiple sclerosis by Professor Ian Robinson and Dr Frank Clifford Rose, and you can watch our copy of the MS Society's DVD for children Annie & Dan talk about MS.
Or have a Link opens in new window look in your local library for Professor Robson's book.
Find this in a library at WorldCat.org

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