L - The Brain Charity

The Brain Charity

Landau-Kleffner Syndrome

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 contact.org.uk Cerebra, UK charity for children with neurological conditions 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) https://tinyurl.com/y2bpusoh Preparing for adult life (Contact, charity for families with disabled children) 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) www.epilepsy.org.uk/info/daily-life/safety/coronavirus-covid-19 Landau Kleffner Syndrome (Epilepsy Action) https://tinyurl.com/ybkll5cy Landau-Kleffner Syndrome Information Page (U.S. National Institute of Neurological Disorders and Stroke) https://tinyurl.com/qs8uyeb Landau-Kleffner syndrome (U.S. Genetic and Rare Diseases Information Center) https://tinyurl.com/y6rjzs7g Living with a condition (The Brain Charity)
News and Events
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.

Leigh Syndrome

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) www.metabolicsupportuk.org Tel. 0845 241 2173 The Leigh Network (Facebook) https://tinyurl.com/yaeud4e The Rare Mitochondrial Disease Service for Adults and Children (NHS) www.mitochondrialncg.nhs.uk
Children & young people	INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19) Advice for patients / parents / guardians (Metabolic Support UK) INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19) NextGen (Metabolic Support (UK) Support for young people (aged 12-18) living with an Inherited Metabolic Disorder www.metabolicsupportuk.org/young-people Alex – Leigh’s Disease (Metabolic Support (UK) www.metabolicsupportuk.org/alex-leighs-disease Leigh syndrome ('Contact' charity for families with disabled children) 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) 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) www.metabolicsupportuk.org/coronavirus-advice Leigh Syndrome (Metabolic Support UK) https://tinyurl.com/y2w6h24z Leigh Syndrome (U.S. National Organization for Rare Disorders) https://rarediseases.org/rare-diseases/leigh-syndrome Leigh's Disease Information Page (U.S. National Institute for Neurological Disorders and Stroke) 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.

Leukodystrophy

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) www.metabolicsupportuk.org Tel: 0845 241 2173 Alex, the Leukodystrophy Charity 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 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) INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19) NextGen (Metabolic Support UK) Support for young people (aged 12-18) living with an Inherited Metabolic Disorder www.metabolicsupportuk.org/young-people Preparing for adult life (Contact, charity for families with disabled children) 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) 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) https://tinyurl.com/yx4qzur4 Leukodystrophy (U.S. National Organization for Rare Disorders, NORD) http://tinyurl.com/yywunvza Leukodystrophy Information Page (U.S. National Institute of Neurological Disorders and Stroke) https://tinyurl.com/ybwu5mys Leukodystrophies (Medline Plus) 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) https://www.surveymonkey.co.uk/r/BPNA_JLA_RESEARCH_PSP
Our resources	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".

Lissencephaly

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. www.rememberingrebecca.co.uk
Online resources	Easy-Read guide to Coronavirus from Mencap link: Easy-Read info on Covid-19 vaccination (Gov.uk) Cortical malformations: Lissencephaly (Contact, charity for families with disabled children) https://tinyurl.com/qrcgrmc Lissencephaly Information page (U.S. National Institute of Neurological Disorders and Stroke) 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)

Locked-in Syndrome

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: www.stroke.org.uk/finding-support Headway, the Brain Injury Association www.headway.org.uk Free helpline 0808 800 2244 Find your local support group: 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) https://tinyurl.com/yxkjazw6
Online resources	Coronavirus (COVID-19) and stroke (Stroke Association) 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) https://tinyurl.com/yy7b8sse Locked In Syndrome (U.S. National Organization for Rare Disorders) https://tinyurl.com/y6vqozsu Living with a condition (The Brain Charity)
News and events	Completely 'locked-in' patients can communicate (BBC website, February 2017) www.bbc.co.uk/news/health-38761461 Locked-in syndrome: rare survivor Richard Marsh recounts his ordeal (The Guardian newspaper website, August 2012) https://tinyurl.com/y3r4pap3
Our resources	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 .

Long Covid

Name	Long Covid
Related to/Also known as	Post-Covid Fatigue Syndrome Post-Covid Post-COVID-19 Neurological Syndrome (PCNS) Post-Viral Fatigue Syndrome (PVFS) ME (Myalgic Encephalomyelitis) Chronic Fatigue Syndrome (CFS) Dysautonomia
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	Long Covid Kids www.facebook.com/longcovidkids PIMS: the COVID-19 linked syndrome affecting children - information for families (Royal College of Paediatrics and Child Health) www.rcpch.ac.uk/resources/pims-covid-19-linked-syndrome-affecting-children-information-families Coronavirus (COVID-19) in children (NHS website) www.nhs.uk/conditions/coronavirus-covid-19/symptoms/coronavirus-in-children/ Long Covid kids: Mum's 'heartbreak' over children's illness (BBC, February 2021) www.bbc.co.uk/news/uk-england-tyne-55938399
Online Long Covid resources	Is there a link between Coronavrus and long-term neurological conditions? (The Brain Charity, September 2020) "Middle-aged women 'worst affected by long Covid', studies find" (BBC, March 2021) www.bbc.co.uk/news/health-56509340 Post COVID-19 Patient information pack (Homerton University Hospital NHS Foundation Trust) www.homerton.nhs.uk/download/doc/docm93jijm4n7420.pdf?amp;ver=15187 COVID-19: long-term health effects (Gov.UK) www.gov.uk/government/publications/covid-19-long-term-health-effects Long COVID symptoms: What we (don’t) know and who it impacts (DW) www.dw.com/en/long-covid-symptoms-treatment-support-effects/a-56220741 How Long Covid challenged my mental health (Mind charity, October 2020) 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) 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) www.brainandspine.org.uk/coronavirus-covid-19 Coronavirus (COVID-19) (NHS website) www.nhs.uk/conditions/coronavirus-covid-19 Chronic fatigue syndrome (CFS/ME) (NHS website) www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs Long Covid: How knowledge of ME could help sufferers (BBC, November 2020) www.bbc.co.uk/news/av/health-55076814 Parosmia: 'Since I had Covid, food makes me want to vomit' (BBC, January 2021) www.bbc.co.uk/news/stories-55824567 Long Covid: 'I can't walk 10m without a rest' (BBC, February 2021) www.bbc.co.uk/news/uk-56113021 Living with a condition (The Brain Charity)
News and events	"New £20m call for research into physical and mental effects of 'long COVID'" (National Institute for Health Research, November 2020) www.nihr.ac.uk/news/new-20m-call-for-research-into-physical-and-mental-effects-of-long-covid/26163 "NHS to offer ‘long covid’ sufferers help at specialist centres"(NHS England website, October 2020) www.england.nhs.uk/2020/10/nhs-to-offer-long-covid-help "CSP welcomes 'long Covid' acknowledgement" (Chartered Society of Physiotherapists, October 2020) 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) 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) www.theguardian.com/society/2020/sep/08/60000-may-have-long-covid-for-more-than-three-months-uk-study ENO Breathe(English National Opera) https://eno.org/eno-breathe
Our resources	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.

Lupus

Name	Lupus
	See Systemic Lupus Erythematosus (SLE)

Lyme Disease

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 www.lymediseaseaction.org.uk
Children & young people	Awareness Packs for Schools and Children (Lyme Diisease UK) https://tinyurl.com/y56drh7u Watch out! Ticks about! (Lyme Disease UK) https://tinyurl.com/yxgknsku
Online resources	Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19 Lyme disease (NHS Choices) https://tinyurl.com/y8dram83 Treatment for the neurological complications of Lyme disease (Cochrane) www.cochrane.org/CD006978/NEUROMUSC_treatment-neurological-complications-lyme-disease Lyme disease (Facial Palsy UK) https://tinyurl.com/y9rkwv3y UK Tick Threat Map (The Big Tick Project) 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) www.bbc.co.uk/news/uk-wales-51070480 "A dangerous 'miracle' solution" (Lyme Disease Action, October 2018) https://tinyurl.com/y68tdfph "Ignorance of tick-borne Lyme disease 'costing lives'" (BBC News, May 2013) www.bbc.co.uk/news/health-22468181
Our resources	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".