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
Online resources	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
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/ages-12-18 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
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/ages-12-18
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 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
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	Lissencephalynnnn
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 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
Our resources	The library at The Brain Charity has a range of resources on Lissencephaly and on a wide range of disability-related issues.

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	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
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 .

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	Lyme disease (NHS Choices) https://tinyurl.com/y8dram83 Lyme disease (Facial Palsy UK) https://tinyurl.com/y9rkwv3y UK Tick Threat Map (The Big Tick Project) https://tinyurl.com/ycx48khu
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".