Name  Facial Palsy
Related to/Also known as 

Facial paralysis

Bell's Palsy
Stroke
Symptoms of Facial Palsy

"The term facial palsy generally refers to weakness of the facial muscles, mainly resulting from temporary or permanent damage to the facial nerve.

"When a facial nerve is either non-functioning or missing, the muscles in the face do not receive the necessary signals in order to function properly. This results in paralysis of the affected part of the face, which can affect movement of the eye(s) and/or the mouth, as well as other areas."

Source: Facial Palsy UK

Useful national contacts Facial Palsy UK
Link opens in new window www.facialpalsy.org.uk
Tel. 0300 030 9333

General enquiries: This email address is being protected from spambots. You need JavaScript enabled to view it.Support: 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.facialpalsy.org.uk/support/local-groups
• The Cheshire & Mersey group meets at The Brain Charity

Changing Faces: supports people who have any condition that affects their appearance
Link opens in new window www.changingfaces.org.uk
Tel. 0300 012 0275
This email address is being protected from spambots. You need JavaScript enabled to view it.

Children & young people Children with facial palsy (Facial Palsy UK)
Link opens in new window www.facialpalsy.org.uk/support/families-friends
Online resources

Facial palsy and coronavirus (Medical Advisory Board statement) (Facial Palsy UK)
Link opens in new window www.facialpalsy.org.uk/support/useful-info/facial-palsy-uks-response-to-coronavirus

Facial Paralysis (MedlinePlus)
Link opens in new windowhttps://tinyurl.com/y96xfcmr

Facial palsy (Queen Victoria Hospital NHS Foundation Trust)
Link opens in new window https://tinyurl.com/yd73lvks

 Living with a condition (The Brain Charity)

Our resources

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

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

Fibro Action UK (FMA UK)
Link opens in new window www.fmauk.org
Helpline 0300 999 3333
Welfare Benefits helpliine 0300 999 0055


UK Fibromyalgia
Tel. 01202 259155
Link opens in new window www.ukfibromyalgia.com
find your local support group:
Link opens in new window https://tinyurl.com/yany82ot

 

Fibromates Northwest - Fibromyalgia Support Group now meets online on Facebook
Link opens in new window www.facebook.com/fibromates

Children & young people Fibromyalgia in Children and Teens (WebMD)
Link opens in new window https://tinyurl.com/y37na7e9
Online resources Corona Virus Information (FMA-UK)
Link opens in new window www.fmauk.org/latest-news-mainmenu-2/articles-1/55-medicalandtrials/1348-coronavirus

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

Centers for Disease Control and Prevention (U.S.): Fibromyalgia
Link opens in new window https://tinyurl.com/2br7hjl

 Living with a condition (The Brain Charity)

News and events The University of Liverpool's Pain Research Institute is looking for volunteers for research into Fibromyalgia
Link opens in new window https://tinyurl.com/yy9b22ue
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 a genetic condition that affects both boys and girls, although boys are often more severely affected.

"It can cause a range of issues with language, emotions, attention, behaviour and social interaction.

."Fragile X is the most common inherited cause of learning disability.

"Of the people who have Fragile X, nearly all boys will have a learning disability but only a third of girls. The learning disability could be mild, moderate or severe, which will affect the amount of support the person needs day-to-day."

Source: Mencap
Link opens in new window https://tinyurl.com/y4ysnrm8

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
Children & young people

An Easy Read Guide to Fragile X Syndrome for Parents (Fragile X Society)
Link opens in new window https://tinyurl.com/yy9ktgp5

 

Preparing for adult life (Contact, charity for families with disabled children)
Link opens in new window https://contact.org.uk/advice-and-support/preparing-for-adult-life

News and events  
Online resources

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

Link opens in new window COVID-19: Supporting autistic people and people with learning disabilities (Social Care Institute for Excellence)

Fragile X syndrome (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/yx4dc6zo

Fragile X syndrome (Mencap)
Link opens in new window www.mencap.org.uk/learning-disability-explained/conditions-linked-learning-disability/fragile-x-syndrome

 Living with a condition (The Brain Charity)

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. 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 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
Children & young people 

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

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

News and events  
Online resources

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

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

Alcohol and the brain (Alcohol Concern)
Link opens in new window www.alcoholconcern.org.uk/arbd

 Living with a condition (The Brain Charity)

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.

 

Name Functional Neurological Disorder (F.N.D.)
Related to/Also known as Functional Movement Disorders
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.

"A good way to help understand functional neurological symptoms is to consider what happens when a computer breaks down. When a computer breaks down, it is usually due to a problem in the software (the programme that makes the computer work) and not the hardware (the computer chips and wires). Similarly, you can think of functional neurological symptoms as a problem where the hardware of your body (brain, spine and nerves) is not damaged, but the software of your body is not working as well as it should."

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

Types Includes NEAD (Non-Epileptic Attack Disorder)
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://tinyurl.com/ux7a2xt

Children & young people Pediatric functional neurologic symptoms (U.S. National Library of Medicine)
Link opens in new window https://tinyurl.com/swxtpoc
News and events   
Online resources

Coronavirus Information (FND Action)
Link opens in new window www.fndaction.org.uk/coronavirus-information

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 magazine of FND Hope
Link opens in new window https://tinyurl.com/y9pq4ecy

Functional Neurological Disorder (Patient UK website)
Link opens in new window https://tinyurl.com/y4qdfpwu

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

 Living with a condition (The Brain Charity)

Our resources F.N.D. Hope booklets

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

This includes copies of the FND Hope booklet 'Functional neurological disorder'.

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
• Find a support group near you: http://tinyurl.com/y37c2z7g
Children & young people GBS and CIPD in children (GAIN)
Link opens in new window https://tinyurl.com/yyygfsqz
News and events Statement from Medicines and Healthcare products Regulatory Agency 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

COVID 19 (Coronavirus) (GAIN)
Link opens in new window https://gaincharity.org.uk/covid-19

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, charity for families with disabled children)
Link opens in new window https://tinyurl.com/w5xavr5

Influenza Immunisation (Gain)
Link opens in new window https://gaincharity.org.uk/wp-content/uploads/2017/10/Immunisation-sheet.pdf 

 Living with a condition (The Brain Charity)

Our resources Jenny's Story

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 "Jenny's Story", a story book about being in hospital with GBSand the treatment involved.

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 is now part of the charity 'Contact'
Conttact's free helpline 0808 808 3555
Link opens in new window https://tinyurl.com/up2jc6g

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
Children & young people

Children and hemiplegia (Chartered Society of Physiotherapy)
Link opens in new window https://tinyurl.com/yx8xjcjr

 

Preparing for adult life (Contact, charity for families with disabled children)
Link opens in new window https://contact.org.uk/advice-and-support/preparing-for-adult-life

News and events  
Online resources

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

What is hemiplegia? An animated film (YouTube video by HemiHelp)
Link opens in new window https://tinyurl.com/y72hnau2

 

 Living with a condition (The Brain Charity)

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
Children & young people

Familial Spastic Paraplegia (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/w8f7at9

Hereditary Spastic Paraplegia (U.S. Child Neurology Foundation)
Link opens in new window https://tinyurl.com/v38qquq

Online resources

Coronavirus - information for people with neurological problems (Brain & Spine Foundation)
Link opens in new window www.brainandspine.org.uk/coronavirus-covid-19

Hereditary spastic paraplegia (NHS Choices)
Link opens in new window www.nhs.uk/conditions/hereditary-spastic-paraplegia

 Living with a condition (The Brain Charity)

News and events  
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.

This includes a copy of the NHS Choices booklet "Hereditary Spastic Paraplegia"

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
Children & young people For children and young people (Huntington's Disease Association)
Link opens in new window https://tinyurl.com/y3synlp4
News and events  
Online resources

COVID-19 information and advice (Huntingdon's Disease Association)
Link opens in new window www.hda.org.uk/getting-help/covid-19-information-advice

Huntington's disease (NHS Choices)
Link opens in new window https://tinyurl.com/y8zc4z5q

Huntington's diease: A Quick Guide for South Asian Families (Huntingdon's Disease Association)
Link opens in new window www.hda.org.uk/media/1570/a-guide-for-south-asian-families.pdf

 Living with a condition (The Brain Charity)

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.

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
• Find support near you: https://tinyurl.com/yyyhwfye

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

Covid 19 (Coronavirus) - Information for Shine members
Link opens in new window www.shinecharity.org.uk/news/news/post/130-coronavirus-information-for-shine-members

Hydrocephalus (Contact, charity for families with disabled children)
Link opens in new window https://contact.org.uk/advice-and-support/health-medical-information/conditions/h/hydrocephalus/?page=5&f=H

Spina bifida (Contact, charity for families with disabled children)
Link opens in new window https://contact.org.uk/advice-and-support/health-medical-information/conditions/s/spina-bifida/?page=3&f=S 

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

 Living with a condition (The Brain Charity)

Our resources

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

Benny gets betterThis includes Shine's book for children about going to hospital "Benny gets bettter".

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

19 Woburn,
Washington,
Tyne and Wear
NE38 7JX
Find support near you: https://tinyurl.com/y9pmj574

Children & young people

IIH and children (IIH UK)
Link opens in new window www.iih.org.uk/iih-children

Paedratric patient leaflet (IIH UK)
Link opens in new window https://tinyurl.com/y56jgxup

Online resources

Coronavirus disease (COVID-19) outbreak and what it means for IIH / IH sufferers (IIH Resourceful Facebook page)
Link opens in new window www.facebook.com/iihresourceful/posts/1823564037779678

IIH UK Patient Leaflet
Link opens in new window https://tinyurl.com/y5f72orl

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

 Living with a condition (The Brain Charity)

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 or dysphasia). Symptoms may also include seizures.
Types  
Useful national contacts

Contact, charity for families with disabled children
Freephone helpline (UK only): 0808 808 3555
Link opens in new window contact.org.uk

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

Children & young people

Landau Kleffner syndrome (Great Ormond Street Hospital for Children)
Link opens in new window https://tinyurl.com/y2bpusoh

 

Preparing for adult life (Contact, charity for families with disabled children)
Link opens in new window https://contact.org.uk/advice-and-support/preparing-for-adult-life

Online resources

Coronavirus (COVID-19) and epilepsy (Epilepsy Action)
Link opens in new window www.epilepsy.org.uk/info/daily-life/safety/coronavirus-covid-19

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/qs8uyeb

Landau-Kleffner syndrome (U.S. Genetic and Rare Diseases Information Center)
Link opens in new window https://tinyurl.com/y6rjzs7g


 Living with a condition (The Brain Charity)
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
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 Metabolic Support UK (formerly known as Climb)
Link opens in new window www.metabolicsupportuk.org
Tel. 0845 241 2173
The Leigh Network (Facebook)
Link opens in new window https://tinyurl.com/yaeud4e
The Rare Mitochondrial Disease Service for Adults and Children (NHS)
Link opens in new window www.mitochondrialncg.nhs.uk
Children & young people

INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19) Advice for patients / parents / guardians (Metabolic Support UK)
Link opens in new window INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19)

NextGen (Metabolic Support (UK)
Support for young people (aged 12-18) living with an Inherited Metabolic Disorder
Link opens in new window www.metabolicsupportuk.org/young-people

Alex – Leigh’s Disease (Metabolic Support (UK)
Link opens in new window www.metabolicsupportuk.org/alex-leighs-disease

Leigh syndrome ('Contact' charity for families with disabled children)
Link opens in new window https://tinyurl.com/yx48ntmn

News and events  
Online resources

Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19 (GOV.UK)
Link opens in new window www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Coronavirus Advice (Metabolic Support UK
Link opens in new window www.metabolicsupportuk.org/coronavirus-advice

Leigh Syndrome (Metabolic Support UK)
Link opens in new window https://tinyurl.com/y2w6h24z

Leigh Syndrome (U.S. National Organization for Rare Disorders)
Link opens in new window https://rarediseases.org/rare-diseases/leigh-syndrome

Leigh's Disease Information Page (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/ybh4rabh


 Living with a condition (The Brain Charity)
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 Leukodystrophy
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 leukodystrophy (MLD)
  • Refsum's disease
  • Adrenoleukodysrophy (ALD)
  • 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

Metabolic Support UK (formerly Climb)
Link opens in new window www.metabolicsupportuk.org
Tel: 0845 241 2173

Alex, the Leukodystrophy Charity
Link opens in new window www.alextlc.org
Tel: 020 7701 4388
This email address is being protected from spambots. You need JavaScript enabled to view it.

MLD Support Association UK
Link opens in new window www.mldsupportuk.org.uk
Tel: 07977 440809

Children & young people

INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19) Advice for patients / parents / guardians (Metabolic Support UK)
Link opens in new window INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19)

NextGen (Metabolic Support UK)
Support for young people (aged 12-18) living with an Inherited Metabolic Disorder
Link opens in new window www.metabolicsupportuk.org/young-people

Preparing for adult life (Contact, charity for families with disabled children)
Link opens in new window https://contact.org.uk/advice-and-support/preparing-for-adult-life


Online resources

Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19 (GOV.UK)
Link opens in new window www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Adrenoleukodystrophy ('Contact' charity  for families with disablllled children)
Link opens in new window https://tinyurl.com/yx4qzur4


Leukodystrophy (U.S. National Organization for Rare Disorders, NORD)
Link opens in new window http://tinyurl.com/yywunvza

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

Leukodystrophies (Medline Plus)
Link opens in new window http://tinyurl.com/y5gay5zq


 Living with a condition (The Brain Charity)
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  
Children & young people Remembering Rebecca (charity)
Registered charity offering financial assistance to children, from birth to 16 years, with Lissencephaly and other neurological conditions.
Link opens in new window www.rememberingrebecca.co.uk
Online resources 

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

Cortical malformations: Lissencephaly (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/qrcgrmc

Lissencephaly Information page (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/ybtzgw4j

News and Events  
Our resources The library at The Brain Charity has a range of  resources on Lissencephaly and on a wide range of disability-related issues.
 Living with a condition (The Brain Charity)

Name  Locked-in Syndrome
Related to/Also known as 

Cerebromedullospinal disconnection
Pseudocoma

Symptoms of Locked-in Syndrome
"Locked-in syndrome is a rare condition where someone is completely paralysed in all parts of their body, apart from the muscles that control eye movement. It can happen because of a number of different conditions such as traumatic brain injury, diseases of the circulatory system and stroke."
Source: Stroke Association https://tinyurl.com/y396u656
Useful national contacts

Stroke Association
www.stroke.org.uk
Stroke Helpline 0303 3033 100
Find your local support group: Link opens in new window www.stroke.org.uk/finding-support


Headway, the Brain Injury Association
Link opens in new window www.headway.org.uk
Free helpline 0808 800 2244
Find your local support group: Link opens in new window www.headway.org.uk/supporting-you/in-your-area

Children & young people "Parents of world's youngest locked-in syndrome sufferer, nine, reveal heartache over daughter who blinks to communicate" (Daily Mail, August 2012)
Link opens in new window https://tinyurl.com/yxkjazw6
Online resources

Coronavirus (COVID-19) and stroke (Stroke Association)
Link opens in new window www.stroke.org.uk/finding-support/coronavirus-covid-19-and-stroke

Locked-In Syndrome Information Page (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/yy7b8sse


Locked In Syndrome (U.S. National Organization for Rare Disorders)
Link opens in new window https://tinyurl.com/y6vqozsu



 Living with a condition (The Brain Charity)
News and events

Completely 'locked-in' patients can communicate (BBC website, February 2017)
Link opens in new window www.bbc.co.uk/news/health-38761461


Locked-in syndrome: rare survivor Richard Marsh recounts his ordeal (The Guardian newspaper website, August 2012)
Link opens in new window https://tinyurl.com/y3r4pap3

Our resources

https://images-na.ssl-images-amazon.com/images/P/1908006641.01._SX900_SCLZZZZZZZ_.jpg The library at the Brain Charity has a range of resources on Locked-in Syndrome and on a wide range of disability related issues.

Visit our library to read our copy of the book Running Free: Breaking out from locked-in syndrome .

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
Children & young people

Awareness Packs for Schools and Children (Lyme Diisease UK)
Link opens in new window https://tinyurl.com/y56drh7u

Watch out! Ticks about! (Lyme Disease UK)
Link opens in new window https://tinyurl.com/yxgknsku

Online resources

Coronavirus - information for people with neurological problems (Brain & Spine Foundation)
Link opens in new window www.brainandspine.org.uk/coronavirus-covid-19

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
 Living with a condition (The Brain Charity)
News and events Lyme disease like 'waking with a hangover' every day (BBC Wales, January 2020)
Link opens in new window www.bbc.co.uk/news/uk-wales-51070480
"A dangerous 'miracle' solution" (Lyme Disease Action, October 2018)
Link opens in new window https://tinyurl.com/y68tdfph
"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: 01306 876883
Find your local support group:
Link opens in new window https://tinyurl.com/y9jlvech
Children & young people Balance Disorders (KidsHealth)
Link opens in new window https://tinyurl.com/y37t9cfu
News and events  
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


 Living with a condition (The Brain Charity)
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
Children & young people

Meningitis in children and young people (Meningitis Now)
Link opens in new window https://tinyurl.com/jd6ubqz

Symptoms Checker for Young Adults (Meningitis Research Foundation)
Link opens in new window https://tinyurl.com/y3mspxhq

Michael Rosen's Sad Book (Michael Rosen)
Chronicles Michael’s grief at the death of his son Eddie from meningitis at the age of 19
Link opens in new window www.michaelrosen.co.uk/portfolio/michael-rosens-sad-book

Online resources

If a styedent is feeling unwell, they shouldn't simply assume it's COVID-19 or a hangover, and seek medical help immediately

FAQs on COVID-19 and meningitis
Link opens in new window www.meningitisnow.org/meningitis-explained/what-is-meningitis/faqs-covid-19-and-meningitis/


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


 Living with a condition (The Brain Charity)

News and events

Meningitis Now warn students not to assume coronavirus (Meningitis Now, August 2020)
Link opens in new window www.meningitisnow.org/support-us/news-centre/news-stories/students-assume-coronavirus

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 https://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

Children & young people Zika Virus (KidsHealth)
Link opens in new window https://tinyurl.com/yyak7a5k
News and events  
Online resources

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

'Zika virus' (NHS Choices)
Link opens in new window https://tinyurl.com/hzvrcjp

'Zika virus infection' (The Encephalis Society)
Link opens in new window www.encephalitis.info/zika-virus


 Living with a condition (The Brain Charity)
Our resources The library at the Brain Charity has a range of resources on disability related issues.

Name Migraine
Related to/Also known as See also Cluster Headaches
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.
• The British Deaf Association has information in BSL about Migraine.
Types See the Migraine Trust's website:
Link opens in new window https://tinyurl.com/ycauko3s
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

Children & young people

Young people with migraine (Migraine Trust)
Link opens in new window https://tinyurl.com/yyvx2kn4

Advice for 7 to 12 year olds (Migraine Trust)
Link opens in new window https://tinyurl.com/y6ox598l

Guide for parents and carers (Migraine Trust)
Link opens in new window https://tinyurl.com/zmhzd96

Migraine in children and adolescents (U.K. National Migraine Centre)
Link opens in new window https://tinyurl.com/yyvaxkml

News and events

The Migraine Trust

• The Migraine Trust's ‘State of the Migraine Nation’ project (December 2019)
Link opens in new window https://tinyurl.com/s85zb97

Online resources

What to know about migraine and COVID-19 (American Migraine Foundation)
Link opens in new window https://americanmigrainefoundation.org/resource-library/covid-19-migraine

Top 5 Migraine Self-care Tips Duing Covid-19 Lockdown (National Migraine Centre)
Link opens in new window www.nationalmigrainecentre.org.uk/top-5-migraine-self-care-tips-during-covid-19-lockdown

Migraine (NHS)
Link opens in new window www.nhs.uk/conditions/migraine

Migraine (Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/yyrg5rqb

"The grim reality of migraine care in the UK" Health Service Journal (December 2019)
Link opens in new window https://tinyurl.com/vrncgmj

Migraine Information Page (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/y6f9y2jt

Acupuncture for preventing migraine attacks (Cochrane Evidence)
Link opens in new window https://tinyurl.com/ydxsos

Hemiplegic Migraine (Orofacial Pain website)
Link opens in new window https://tinyurl.com/yxhowvoh

Migraine with Aura (U.K. National Migraine Centre)
Link opens in new window https://tinyurl.com/ugpf9uy


 Living with a condition (The Brain Charity)
Our resources Supporting young migraineursThe 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".