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

 The Brain Changer Arts Project (The Brain Charity)

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)
News and Events Survey: Treatment of Childhood Neurological Conditions (British Paediatric Neurology Association, September 2020)
Link opens in new window https://www.surveymonkey.co.uk/r/BPNA_JLA_RESEARCH_PSP
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

 The Brain Changer Arts Project (The Brain Charity)

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)
News and Events Survey: Treatment of Childhood Neurological Conditions (British Paediatric Neurology Association, September 2020)
Link opens in new window https://www.surveymonkey.co.uk/r/BPNA_JLA_RESEARCH_PSP
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  Long Covid
Related to/Also known as
  • Post-Covid Fatigue Syndrome
  • Post-Covid
  • Post-COVID-19 Neurological Syndrome (PCNS)
Symptoms of Long Covid

"Post-COVID-19 effects could include:

  • "Muscle weakness and joint stiffness
  • "Extreme tiredness (fatigue) and a lack of energy
  • "A persistent cough
  • "Loss of appetite, weight loss, swallowing difficulties
  • "Sleep problems ...
  • "Memory problems ...
  • "Changes in your mood, or anxiety or depression "

Source: Oxford Health NHS Foundation Trust https://www.oxfordhealth.nhs.uk/wp-content/uploads/2020/03/OH-090.20-Post-COVID-Leaflet.pdf

"Post/Long-Covid is not simply the same as ME/CFS.

"However, some people with Post/Long-Covid have an illness and symptoms that are almost certainly the same as the Post-Viral Fatigue Syndromes (PVFS) that often precede a diagnosis of  where an infection is believed to be the trigger.

"Some people with Post/Long-Covid are being diagnosed with ME/CFS as their symptoms persist for more than 3-4 months and because they meet the ME/CFS diagnostic criteria."

Source: ME Association https://meassociation.org.uk/2020/10/me-association-statement-on-the-nice-clinical-guideline-for-me-cfs-and-the-nice-guideline-for-post-long-covid-19

"We know some people may have breathing difficulties after recovering from COVID-19. We don’t yet know if this is from the virus, or from receiving treatment for the virus."

Source: British Lung Foundation https://hello.blf.org.uk/page/61034/action/1?_ga=2.149667315.49739266.1605175776-1802521911.1605175776

Useful national contacts

ME Association
ME Connect Telephone Helpline: 0344 576 5326
Web: https://meassociation.org.uk
Find your local support group: https://meassociation.org.uk/information-and-support-line/localsupportgroups


Post-COVID HUB (Asthma UK and British Lung Foundation)
team of respiratory specialists are to support you with post-COVID breathlessness
Phone 0300 222 5942, 9am – 5pm, Monday to Friday
Web: www.post-covid.org.uk

Children & young people

PIMS: the COVID-19 linked syndrome affecting children - information for families (Royal College of Paediatrics and Child Health)
Link opens in new window www.rcpch.ac.uk/resources/pims-covid-19-linked-syndrome-affecting-children-information-families

Coronavirus (COVID-19) in children (NHS website)
Link opens in new window www.nhs.uk/conditions/coronavirus-covid-19/symptoms/coronavirus-in-children/

Online Long Covid resources

 Is there a link between Coronavrus and long-term neurological conditions? (The Brain Charity, September 2020)

Post COVID-19 Patient information pack (Homerton University Hospital NHS Foundation Trust)
Link opens in new window www.homerton.nhs.uk/download/doc/docm93jijm4n7420.pdf?amp;ver=15187

COVID-19: long-term health effects (Gov.UK)
Link opens in new window www.gov.uk/government/publications/covid-19-long-term-health-effects

How Long Covid challenged my mental health (Mind charity, October 2020)
Link opens in new window www.mind.org.uk/information-support/your-stories/how-long-covid-challenged-my-mental-health/

Post-viral fatigue: a guide to management (North Bristol NHS Trust)
Link opens in new window www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/post-viral-fatigue-a-guide-management

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

Coronavirus (COVID-19) (NHS website)
Link opens in new window www.nhs.uk/conditions/coronavirus-covid-19

Chronic fatigue syndrome (CFS/ME) (NHS website)
Link opens in new window www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs

Long Covid: How knowledge of ME could help sufferers (BBC, November 2020)
Link opens in new window www.bbc.co.uk/news/av/health-55076814

 Living with a condition (The Brain Charity)

News and events

"NHS to offer ‘long covid’ sufferers help at specialist centres"(NHS England website, October 2020)
Link opens in new window www.england.nhs.uk/2020/10/nhs-to-offer-long-covid-help

"CSP welcomes 'long Covid' acknowledgement" (Chartered Society of Physiotherapists, October 2020)
Link opens in new window www.csp.org.uk/news/2020-10-08-csp-welcomes-long-covid-acknowledgement

"'Long covid': Grigor Dimitrov on still suffering from coronavirus symptoms" (BBC, November 2020)
Link opens in new window www.bbc.co.uk/sport/54872855

"Coronavirus: 60,000 may have 'long Covid' for more than three months – UK study" (The Guardian newspaper, September 2020)
Link opens in new window www.theguardian.com/society/2020/sep/08/60000-may-have-long-covid-for-more-than-three-months-uk-study

Our resources Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS

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

This includes the ME Association's booklet Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS.

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".