Name Restless Legs Syndrome (RLS
Related to/Also known as Willis-Ekbom Disease
Ekboms Syndrome
Wittmaack-Ekbom syndrome
Symptoms of Restless Legs Syndrome
RLS is characterised by intense discomfort within the legs, and an unremitting urge to move them. It results in what may be described as a crawling, bubbling or jerking feeling in the legs and other part of the body. Movement relieves the sensation, but the relief is short-lived.
Types  
Useful national contacts RLS-UK
Helpline: 01634 260483, 9-11am
Link opens in new window www.rls-uk.org
Children & young people RLS in children (RLS-UK)
Link opens in new window www.rls-uk.org/rls-in-children
Online resources Restless legs syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/y7qjhwf7

Restless legs syndrome (Patient.info)
Link opens in new window https://tinyurl.com/y8lhoqwr

 

 Living with a condition (The Brain Charity)

Our resources

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

Restless Legs Syndrome Visit our library to read Restless Legs Syndrome by K. Ray Chaudhuri and others. 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 Rett Syndrome
Related to/Also known as  
Symptoms of Rett Syndrome
Rett Syndrome is a complex neurological disorder that mainly affects girls. It usually becomes evident in the second year of life, and leads to profound mental and physical disability.
Types  
Useful national contacts Rett UK
Link opens in new window www.rettuk.org
Tel: 01582 798911
Find your nearest support group:
Link opens in new window https://tinyurl.com/ybvxhwze
Cerebra, UK charity for children with neurological disorders
Link opens in new window https://cerebra.org.uk
Children & young people Family Companion (Rett UK)
Link opens in new window https://tinyurl.com/y3zl9so2
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
Online resources

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

Rett UK Information, Advice & Resources – COVID-19 (Coronavirus) (Rett UK)
www.rettuk.org/covid19

Rett syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/yc3pfvkh
Rett syndrome (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/u8q5y8x

Rett Syndrome Information Page (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/yc8a8kfo

 

 Living with a condition (The Brain Charity)

Our resources Rett Syndrome Handbook: In words you can understand from those who understand

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

Visit our library to read theRett Syndrome Handbook: In words you can understand from those who understand.

Name  Sarcoidosis
Related to/Also known as  Neurosarcoidosis
Symptoms of Sarcoidosis
Sarcoidosis is a systemic disorder, which can affect any organ of the body, most commonly the lungs, skin and eyes. Cells cluster together in tiny nodules or sarcoid granulomas, as an inflammatory response to infection or another cause. The disease can range from a mild, self-limiting condition to a severe, chronic and progressive illness.
Useful national contacts

SarcoidosisUK (formerly SILA Sarcoidosis and Interstitial Lung Association)
Link opens in new window http://sarcoidosisuk.org
UK Toll Free: 0800 014 8821

Find your nearest support group:
Link opens in new window https://tinyurl.com/yd7s87sx

Children & young people Sarcoidosis and children (SarcoidosisUK)
Link opens in new window https://tinyurl.com/y4z55pf9
Online resources

NHS Coronavirus advice: If you have sarcoidosis and you're worried about coronavirus, you can get advice about coronavirus and sarcoidosis from the British Lung Foundation.

Coronavirus (Covid-19) (SarcoidosisUK)
wLink opens in new windowww.sarcoidosisuk.org/information-hub/coronavirushome

Sarcoidosis (NHS Choices)
Link opens in new window https://tinyurl.com/lncfbpb


 Living with a condition (The Brain Charity)
Our resources

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

Name Sjögren's Syndrome (SS)
Related to/Also known as  
Symptoms of Sjögren's Syndrome Sjögren's Syndrome (SS) is an auto-immune disease, in which the immune system attacks the salivary and tear glands, leading to dryness of the mouth and eyes.
Types Sjögren's Syndrome can occur as a primary disorder (Primary Sjögren's Syndrome) or secondary to another connective tissue disorder such as rheumatoid arthritis.
Useful national contacts British Sjögren's Syndrome Association
Link opens in new window www.bssa.uk.net
Helpline: 0121 478 1133
Children & young people Sjøgren's syndrome in children, juvenile Sjøgren's syndrome (Connective Tissue Diseases website, Norwegian, in English)
Link opens in new window https://tinyurl.com/y4atrevm
Online resources

Covid-19 (Coronavirus) (BSSA)
Link opens in new window www.bssa.uk.net/live/news/news61.asp

Sjögren's syndrome (NHS Choices website)
Link opens in new window https://tinyurl.com/y8worzsz


Sjögren's syndrome (Versus Arthritis)
Link opens in new window https://tinyurl.com/rn986cp

 

 Living with a condition (The Brain Charity)

Our resources Sjögren's Syndrome

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

This includes a copy of the booklet "Sjögren's Syndrome" by Arthritis Research UK.

Name Spina Bifida
Related to/Also known as Spinal Dysraphism
Hydrocephalus
Symptoms of Spina Bifida
Spina Bifida (split spine) is a fault in the spinal column, in which one or more of the vertebrae fail to form properly, thereby leaving a gap. It occurs early in pregnancy and is therefore present at birth.
Types

Spina Bifida Occulta is a very mild form, which may only be evident as dimpling of the skin or a hairy patch.

Spina Bifida Cystica is a form where a sac or cyst is visible on the back. If the sac contains nerves and part of the spinal cord, it is known as a Myelomeningocele and will result in some degree of paralysis and disability. If it contains tissue and cerebro-spinal fluid, it is called a Meningocoele and is unlikely to cause disability.

Hydrocephalus is a build-up of C.S.F. (cerebro-spinal fluid) in the brain, and many people with Spina Bifida have Hydrocephalus.
See Hydrocephalus for more information.

Useful national contacts

Shine 
Link opens in new window www.shinecharity.org.uk
Helpline: 01733 555988


Scottish Spina Bifida Association
Link opens in new window www.ssba.org.uk

Children & young people

Advice for parents (Shine)
Link opens in new window https://tinyurl.com/y2avzs3d

 

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

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

Spina bifida (NHS Choices)
Link opens in new window https://tinyurl.com/yd9ehdfa

Spina bifida (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/rzegfpr


 Living with a condition (The Brain Charity)
Our resources

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

 

Name Spinal Cord Tumour
Related to/Also known as  
Symptoms of Spinal Cord Tumour Spinal cord tumours are abnormal growths of tissue within the spinal column and are mostly benign. They tend to develop very slowly and worsen over time, unless treated. Symptoms include pain, sensory changes, and motor problems.
Types  
Useful national contacts Spinal Cord Tumour Forum
Link opens in new window www.spinalcordtumour.org.uk
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Brain & Spine Foundation
Link opens in new window www.brainandspine.org.uk
Helpline: 0808 808 1000

Children & young people

Brain and Spinal Tumours (Children With Cancer UK)
Link opens in new window https://tinyurl.com/y64efjj4

Advice on coronavirus for families affected by childhood cancer (Children With Cancer UK)
Link opens in new window www.childrenwithcancer.org.uk/childhood-cancer-info/coronavirus-advice

Online resources

Advice for people at high risk - Coronavirus (COVID-19) (NHS)
wLink opens in new windowww.nhs.uk/conditions/coronavirus-covid-19/advice-for-people-at-high-risk

Spinal cord tumors (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/y8egqnkm


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

Name Spinal Injuries
Related to/Also known as  
Symptoms of Spinal Cord Injury

Spinal Cord Injury (SCI) is damage to the spinal cord, which results in a loss of function, such as mobility or feeling. Most spinal cord damage occurs as a result of physical injury, such as car accidents, gunshot, falls etc. The level of injury and extent of paralysis depends on where the spinal cord was damaged and how severely. The spinal cord is divided into four sections:

  • Cervical (C) - the neck region
  • Thoracic (T) - the chest region
  • Lumbar (L) - the lower back region
  • Sacral (S) - the tailbone region

Each of these regions has a number of vertebrae and spinal nerves, and thus the site of the damage may be described as, for example, L3, or C 4.

Types  
Useful national contacts Spinal Injuries Association (SIA)
Link opens in new window www.spinal.co.uk
Helpline: 0800 980 0501
• The Merseyside Spinal Injuries Group meets at The Brain Charity

Brain & Spine Foundation
Link opens in new window www.brainandspine.org.uk
Helpline: 0808 808 1000


Aspire: supporting people with spinal injury
Link opens in new window www.aspire.org.uk
Tel: 020 8954 5759


Back Up: for everyone effected by spinal  cord injury
Tel. 020 8875 1805
Link opens in new window www.backuptrust.org.uk


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
Children & young people  Support for children and young people (Back Up)
Link opens in new window https://tinyurl.com/y6qqzowd
News and Events October 16th is World Spine Day
Link opens in new window www.worldspineday.org
Online resources

Coronavirus and SCI (Spinal Injuries Association)
Link opens in new window www.spinal.co.uk/coronavirus

What is a spinal cord injury? (Spinal Research)
Link opens in new window www.spinal-research.org/injury/what-spinal-cord-injury


Understanding spincal cord injury (Spinal Injuries Association)
Link opens in new window www.spinal.co.uk/learn/understanding-sci
 Living with a condition (The Brain Charity)
Our resources

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

Spinal cord injury Visit our library to read the booklet Spinal cord injury by the U.S. National Institute of Neurological Disorders and Stroke (NINDS).

Name Stiff-Person Syndrome (SPS)
Related to/Also known as
  • Stiff man syndrome
  • Moersch-Woltman syndrome
  • Progressive encephalomyelitis with rigidity and myoclonus (PERM)
Symptoms of Stiff-Person Syndrome

"Stiff person syndrome (SPS) is a very rare disease affecting only one or two people per million. It causes progressive muscle stiffness and painful spasms that can be triggered by a variety of things including sudden movement, cold temperature or unexpected loud noises."

Source: Johns Hopkins Medecine (U.S.)

"SPS does not appear to differentiate between sex, colour, or creed, although UK evidence tends to suggest women are more likely to fall victim to SPS. SPS is a neurological condition believed to be of auto-immune origin. It is unique among neurological diagnoses due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. Because of its rarity, many neurologists and GPs are not aware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression. The onset is most frequent between the third and fourth decades of life."

Source: Genetic Alliance UK

Types
  • Classic SPS
  • Focal SPS
  • Jerking SPS
Useful national contacts SPS Support Group (Stiff Person Syndrome UK and Ireland Support Group and Charity)
Tel: 01482 868881
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Link opens in new window https://lizblows.wixsite.com/spsuk
Children & young people "Reports of pediatric-onset stiff-man syndrome (SMS) are rare. This may be an underrecognized disorder in child neurology practice." (U.S. National Center for Biotechnolocgy Information)
Link opens in new window www.ncbi.nlm.nih.gov/pmc/articles/PMC4819072
News and Events "Diagnosed with stiff person syndrome" (Sharing Mayo Clinic News, April 2019)
Link opens in new window https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-diagnosed-with-stiff-person-syndrome
Online resources

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

Stiff Person Syndrome (NORD, U.S. National Organization for Rare Disorders)
Link opens in new window https://rarediseases.org/rare-diseases/stiff-person-syndrome

Stiff person syndrome (U.S. Genetic and Rare Diseases Information Center)
Link opens in new window https://rarediseases.info.nih.gov/diseases/5023/stiff-person-syndrome

Stiff-Person Syndrome (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window www.ninds.nih.gov/Disorders/All-Disorders/Stiff-Person-Syndrome-Information-Page

 

 Living with a condition (The Brain Charity)

Our resources

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

Name Stroke
Related to/Also known as Subarachnoid Haemorrhage (SAH)
Symptoms of Stroke

A stroke occurs because of disruption to the blood supply to a particular area of the brain, causing damage to that area of the brain.

• The British Deaf Association has information in BSL about Stroke.

FAST test

  • Face: Can the person smile? Has their face fallen on one side?
  • Arms: Can the person raise both arms and keep them there?
  • Speech problems: Can the person speak clearly and understand what you say? Is their speech slurred?
  • Time: if you see any of these three signs, it's time to call 999.

 Source: Stroke Association

Types
  • Ischaemic Stroke - caused by an interruption to the flow of blood to the brain, and is the most common type.
  • Haemorrhagic Stroke - results from arterial bleeds, rather than obstructions to the blood flow.
  • Transient Ischaemic Attack (T.I.A.) - often called a mini-stroke, and can be warning symptoms leading to a full stroke.
Useful national contacts

Stroke Association
Link opens in new window www.stroke.org.uk
Helpline: 0303 303 3100
Find your local support group:
Link opens in new window https://tinyurl.com/y9opk5au
Stroke Friends: stroke and aphasia support group meets at The Brain Charity


Different Strokes
Provides support to families where either a child has had a stroke or a child is affected by the stroke of a parent
Helpline: 0845 130 7172
Link opens in new window www.differentstrokes.co.uk
Find your local support group:
https://tinyurl.com/yc727ob
Chest Heart & Stroke Scotland
Freefone advice line nurses: 0808 801 0899
Link opens in new window www.chss.org.uk

Blood Pressure UK
Phone 020 7882 6218
Email This email address is being protected from spambots. You need JavaScript enabled to view it.
Link opens in new window www.bloodpressureuk.org

Children & young people

Different Strokes
Provides support to families where either a child has had a stroke or a child is affected by the stroke of a parent
Helpline: 0845 130 7172
www.differentstrokes.co.uk
Find your local support group:
https://tinyurl.com/yc727obs

SameYou
charity for young adults with brain injury and stroke
Link opens in new window www.sameyou.org

All about stroke: information for children (Stroke Association)
Link opens in new window www.stroke.org.uk/resources/all-about-stroke-information-children

Childhood stroke (Stroke Association)
Link opens in new window www.stroke.org.uk/childhood-stroke

Online resources

Information on coronavirus for stroke survivors (Stroke Association)
Link opens in new window www.stroke.org.uk/finding-support/information-coronavirus-stroke-survivors

Coronavirus information for people affected by stroke (Stroke Association)
Link opens in new window www.stroke.org.uk/news/coronavirus-information-people-affected-stroke

Coronavirus information and support (Chest Heart & Stroke Scotlans)
Link opens in new window www.chss.org.uk/coronavirus/coronavirus-advice

Wearing a mask or face covering (Stroke Association)
Link opens in new window www.stroke.org.uk/finding-support/wearing-mask-or-face-covering

How to do the FAST test
Link opens in new window https://youtu.be/-8saTsVFFr4 via @TheStrokeAssoc #ActFAST

Physiotherapy works: Stroke (Chartered Society of Physiotherapists factsheet)
Link opens in new window www.csp.org.uk/search/all/stroke

"Game your brain: the new benefits of neuroplasticity" (Wired magazine, May 2014)
Link opens in new window https://tinyurl.com/y7lrce46

"Stroke and migraine: is there a link?" (The Migraine Trust)
Link opens in new window http://tinyurl.com/y68u46pz

Reducing your risk of stroke: information for African and Carribean people (Stroke Association)
Link opens in new window www.stroke.org.uk/resources/reducing-your-risk-stroke-information-african-and-caribbean-people

Information in other languages (Stroke Association)
Link opens in new window www.stroke.org.uk/our-publications/information-other-languages

News and events  
Our resources Can I tell you about having a Stroke? A guide for friends, family and professionals

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

Visit our library to read Can I tell you about having a stroke? A guide for friends, family and professionals. by Lisa Yaylor. 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 Sturge-Weber Syndrome
Related to/Also known as  
Symptoms of Sturge Weber Syndrome

Sturge Weber Syndrome is a rare neurological condition and is not hereditary. To date, there is no medical explanation as to why anyone is born with Sturge Weber.

Sturge Weber Syndrome has many associated problems and symptoms. Sturge Weber is normally (but not always) indicated by a facial port wine stain.

Types  
Useful national contacts Sturge Weber UK
Link opens in new window www.sturgeweber.org.uk

Tel: 01392 464675

Children & young people Sturge-Weber syndrome (Contact, charity for people with disabled children)
https://tinyurl.com/ruxffqd
Online resources Sturge-Weber syndrome (Epilepsy Action)
Link opens in new window https://tinyurl.com/ycdokd45

Sturge-Weber Syndrome Information Page (U.S. National Institute of Neurological Disorders and Stroke website)
Link opens in new window https://tinyurl.com/y9o8hg6h
News and events  
Our resources The library at The Brain Charity has a range of resources on Sturge Weber Syndrome and on a wide range of disability-related issues.

Name Subarachnoid Haemorrhage (SAH)
Related to/Also known as  See also Aneurysm, Arteriovenous Malformation, Stroke
Symptoms of Subarachnoid Haemorrhage

A subarachnoid haemorrhage is an uncommon type of stroke caused by bleeding on the surface of the brain. It's a very serious condition and can be fatal.

SAH is a sudden bleeding over the surface of the brain, under the arachnoid layer. Bleeding usually originates from a ruptured aneurysm or an arteriovenous malformation (AVM). The most common symptom is a sudden, severe headache, often followed by a loss of consciousness.

Types  
Useful national contacts BASIC (Brain and Spinal Injury Charity)
Link opens in new window www.basiccharity.org.uk
Phone: 0161 707 6441 

Brain and Spine Foundation
Helpline: 0808 808 1000
Link opens in new window www.brainandspine.org.uk

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


• The Liverpool Brain Haemorrhage Support Group meets at The Brain Charity's Coffee Morning

Online resources

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

Subarachnoid haemorrhage (NHS Choices)
Link opens in new window https://tinyurl.com/yc6la6x4


Subarachnoid haemorrhage (Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/c5awsbb

Sub-arachnoid haemorrhage (Salford Royal NHS Foundation Trust)
Link opens in new window https://tinyurl.com/y9gbszoh

News and events  
Our resources A dented

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

Visit our library to read A Dented Image: Journeys of recovery from Subarachnoid Haemorrhage by Alison Wertheimer. Or have a Link opens in new window look in your local library for this book.
Find this in a library at WorldCat.org


The Brain Haemorrhage Support Group meets at our centre in Liverpool several times a year
Link opens in new window www.bhsupport.org.uk
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Tel: 07821 620165

Name  Systemic Lupus Erythematosus (SLE)
Related to/Also known as  Lupus
Symptoms of LupusSLE

"SLE is a chronic disease which affects one or many tissues of the body: Skin, joints, mucles, blood vessels, blood cells, brain and nerves...

"Inflammatory and immune responses account for many of the symptoms observed in systemic lupus."

Source: Lupus UK

Types
  • Discoid lupus (DLE)
  • Systemic lupus erythematosus (SLE)
  • Drug-induced Lupus (DILE)
Useful national contacts

Lupus UK
Tel: 01708 731251
Link opens in new window www.lupusuk.org.uk
Find a support group near you:
Link opens in new window www.lupusuk.org.uk/regional-group-finder/


Lupus Trust
Tel: 020 7188 3562
Link opens in new window www.lupus.org.uk


Hibbs Lupus Trust
Tel: Freefone 0800 633 5118 Monday to Friday from 9 a.m. to 5 p.m.
Link opens in new window www.hibbslupustrust.org

Children & young people Lupus (KidsHealth)
Link opens in new window https://kidshealth.org/en/teens/lupus.html
Pediatric Lupus: Different than in adults (Lupus Trust)
Link opens in new window https://tinyurl.com/y3vwty54
Online resources

Lupus & Coronavirus (COVID-!9) (Hibbs Lupus Trust)
Link opens in new window www.hibbslupustrust.org/coronavirus

Lupus (NHS Choices)
Link opens in new window https://tinyurl.com/q88arwm

Lupus (SLE) (Versus Arthritis)
Link opens in new window https://tinyurl.com/vzs5yk7


 Living with a condition (The Brain Charity)
News and events October is Lupus Awareness Month
Link opens in new window www.lupusuk.org.uk/lupus-awareness-month
Our resources

The library at The Brain Charity has a range of resources on Lupus/SLE and on a wide range of disability related issues.

The diagnosis of Lupus This includes the Lupus UK booklet The diagnosis of Lupus.

Name  Tinnitus
Related to/Also known as 

 

Symptoms of Tinnitus

"Tinnitus is often described as a ringing in the ears. It also can sound like roaring, clicking, hissing, or buzzing. It may be soft or loud, high pitched or low pitched. You might hear it in either one or both ears."

Source: Link opens in new window Medline Plus (U.S. National Library of Medicine)

Useful national contacts British Tinnitus Association
Link opens in new window www.tinnitus.org.uk
Find your nearest support group:
www.tinnitus.org.uk/find-a-support-group

Action On Hearing Loss
Link opens in new window www.actiononhearingloss.org.uk
Children & young people Information leaflets for children (British Tinnitus Association)
Link opens in new window www.tinnitus.org.uk/support-for-children
Online resources

Social distancing and managing tinnitus (British Tinnitus Association)
Link opens in new window www.tinnitus.org.uk/managing-tinnitus-in-social-isolation

Tinnitus (NHS Choices)
Link opens in new window https://tinyurl.com/lh8ue4


Tinnitus (Contact, charity for people with disabled children)
Link opens in new window https://tinyurl.com/vgbuxdp

 

 Living with a condition (The Brain Charity)

News and events  
Our resources

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

Name Tourette Syndrome
Related to/Also known as Tourette's syndrome
Symptoms of Tourette Syndrome
Tourette Syndrome is a neurological disorder characterised by multiple tics, which are sudden, repetitive involuntary movements and sounds. The condition varies greatly in its severity. Children may also have other behavioural problems.
Types  
Useful national contacts Tourettes Action
Link opens in new window www.tourettes-action.org.uk
Helpline: 0330 777 8427
Find your nearest support group:
Link opens in new window https://tinyurl.com/y7rfbss7
Children & young people Children & young people (Tourettes Action)
Information related to children and young people who have Tourette Syndrome.
Link opens in new window https://tinyurl.com/y3g4es53
Online resources

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

 

ourette's Syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/pjswg3p


Tourette's Syndrome (TS) (NHS Choices video)
A neurologist talks about Tourette's syndrome
Link opens in new window https://tinyurl.com/y7lqq97r


How Tourette's Syndrome affects learning (About Learning Disabilities)
Link opens in new window https://tinyurl.com/y8aw7ufll

Touretteshero (raising awareness and dealing with challenges)
Link opens in new window www.touretteshero.com


The pain of Tourette's: 'I'm always covered in bruises' (BBC, January 2019)
Link opens in new windowLink opens in new window https://tinyurl.com/ycacp82s

 

 Living with a condition (The Brain Charity)

News and events  
Our resources

Can I Tell You About Tourette Syndrome? A guide for friends, family and professionals The library at The Brain Charity has a range of resources on Tourette Syndrome and on a wide range of disability-related issues.

Visit our library to read Can I Tell You About Tourette Syndrome? A guide for friends, family and professionals by M. Leicester, T. Phillips-Smith and J. Collier. 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 Transverse Myelitis (TM)
Related to/Also known as  
Symptoms of Transverse Myelitis
Transverse Myelitis is a rare neurological disorder caused by inflammation of the spinal cord across one level of the cord. The main symptoms of the disease are reduced muscle strength and altered sensation below the affected area.
Types  
Useful national contacts Transverse Myelitis Society
Link opens in new window www.myelitis.org.uk
Find your nearest support group:
Link opens in new window http://supportgroups.myelitis.org.uk

Brain and Spine Foundation
Link opens in new window www.brainandspine.org.uk
Helpline: 0808 808 1000

Children & young people When your child has TM (Transverse Myelitis Society)
Link opens in new window www.myelitis.org.uk/parent.html
News and events  
Online resources

Link opens in new window COVID-19 and Rare Neuroimmune Disorders (Siegel Rare Neuroimmune Association)

Rare Disease UK (RDUK) is the national alliance for people in the UK with rare diseases
Link opens in new window www.raredisease.org.uk


RareShare is a unique social forum, building communities for patients, families, and healthcare professionals affected by rare disorders.
Link opens in new window www.rareshare.org

 

 Living with a condition (The Brain Charity)

Our resources

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

This includes the Brain & Spine Foundation's booklet Transverse myelitis.

Name  Trigeminal Neuralgia (TN)
Related to/Also known as   Fothergill's Disease
Symptoms of Trigeminal Neuralgia
Trigeminal Neuralgia is an extremely severe facial pain, which tends to come and go unpredictably in sudden shock-like attacks. The pain is along the pathway of the trigeminal nerve, typically the upper or lower jaw or the cheek, and is usually confined to one side of the face.
Useful national contacts

Trigeminal Neuralgia Association UK
PO Box 234
Oxted
Surrey RH8 8BE
Phone: 01883 370214
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Link opens in new window www.tna.org.uk

Children & young people Children and young people with TN (Trigeminal Neuralgia Association UK)
Link opens in new window https://tinyurl.com/sk3ugyc
Online resources

 Trigeminal neuralgia (NHS Choices)
Link opens in new window https://tinyurl.com/y8r83hws

Trigeminal neuralgia (MS Trust)
Link opens in new window www.mstrust.org.uk/a-z/trigeminal-neuralgia

Trigeminal Neuralgia (NORD, U.S. National Organization for Rare Disorders)
Includes details of TNI andTN2, 'classical' and 'atypical' Trigeminal Neuralgia
Link opens in new window https://tinyurl.com/y28z9njm

 

 Living with a condition (The Brain Charity)

Our resources Trigeminal Neuralgia: An overview

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

Visit our library to read our copy of the Trigeminal Neuralgia Association's booklet "Trigeminal Neuralgia: An overview".

Name Tuberous Sclerosis (TSC)
Related to/Also known as Tuberous Sclerosis Complex

Bourneville disease

Symptoms of Tuberous Sclerosis
Tuberous Sclerosis is a complex multi-system disorder, which produces tuber-like growths on the brain. These calcify with age, and can also be found on other organs including the heart, skin and kidneys. It affects people in many different ways and with varying severity.
Types  
Useful national contacts Tuberous Sclerosis Association
P.O. Box 8001
Derby DE1 0YA
Link opens in new window www.tuberous-sclerosis.org
Tel: 01332 290734
Children & young people Tuberous Sclerosis (for Parents) (KidsHealth)
Link opens in new window https://tinyurl.com/ujs5gyb
Online resources

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

 

Tuberous Sclerosis (NHS Choices)
Link opens in new window https://tinyurl.com/yb2wzyut


Rare Disease UK(RDUK) is the national alliance for people in the UK with rare diseases
Link opens in new window www.raredisease.org.uk/


RareShare is a unique social forum, building communities for patients, families, and healthcare professionals affected by rare disorders.
Link opens in new window www.rareshare.org

 

 Living with a condition (The Brain Charity)

News and Events  
Our resources

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

Turbo & Scott

This includes copies of Turbo & Scott, a graphic novel aimed at teenagers.

Coronavirus: Wash your hands

Emergency Care: It’s really important that for emergencies like suspected stroke or heart attack you call 999 straightaway. With conditions like this every second counts – so don’t delay.

Urgent care and advice: If you need urgent care or advice about a medical condition you can still use NHS 111 (call 111 if you can't get help on-line), or contact your GP practice for help. For BSL use this video interpreter service for NHS 111. Whether you are concerned about a new health problem, or you have a long-term condition and your symptoms get worse, don’t put off getting in touch.

Routine care and appointments: Please use other vital services as normal, such as cancer screening and care, maternity appointments and mental health support.

N.H.S. at 70: The story of our lives

The National Health Service (NHS) is divided into four independent health services for the UK's four devolved nations: England, Scotland, Wales, and Northern Ireland.

The Brain Charity is a registered charity, and we are independent of the NHS. But we do have link workers based at The Walton Centre NHS Foundation Trust in Liverpool.

NHS England

Services

Other languages

Choose and book

Feedback and complaints

Health records

Clinical trials and medical research

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NHS Inform (Scotland)

Services

Other languages

Feedback and complaints

Health records

Clinical trials and medical research

NHS Wales

Services

Other languages

Feedback and complaints

Health records

Clinical trials and medical research

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Health and Social Care Northern Ireland

Services

Other languages

Feedback and complaints

Health records

Clinical trials and medical research

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Link opens in new window COVID-19: guidance for the public on mental health and wellbeing (Gov.UK)
Link opens in new window Coronavirus and your wellbeing (Mind)
Link opens in new window Coronavirus (COVID-19): an easy-read guide to looking after your feelings and your body(Gov.UK)
Free distractions online: things to do during lock-down

What is Anxiety?

Anxiety is a normal, if unpleasant, part of life, and it can affect us all in different ways and at different times. Anxiety is something that can persist whether or not the cause is clear to the sufferer.

Anxiety can make a person imagine that things in their life are worse than they really are, and prevent them from confronting their fears. Some people have a very identifiable cause for their anxiety; a traumatic incident, lots of stressors or have undergone a significant life event (moving house, getting divorced, having surgery). However, some people do not have an identifiable cause for their anxiety and this causes them some distress. Often people use something positive that they can do to manage their anxiety, such as yoga, exercise, reading, listening to music or spending time with family or friends.

Symptoms of Anxiety

Common physical symptoms

  • Increased heart rate
  • Increased muscle tension
  • Hyperventilation (over breathing)
  • Dizziness
  • Dry mouth
  • Shaking
  • Palpitations
  • Increased perspiration
  • Tension headaches

Common psychological symptoms

  • Thinking you may lose control of your mind/thoughts
  • Thinking you might die
  • Feeling detached from your environment and the people in it
  • Feeling like wanting to run away/escape from the situation
  • Feeling on edge and alert to everything around you

Retrieved from:  www.anxietyuk.org.uk/get-help/anxiety-information

Getting support

  • The Brain Charity can offer counselling, and stress and relaxation treatments, at our centre in Liverpool (check our events calendar). We also have our own library, which has a wide range of information on neurological conditions, and on living with a condition.
  • We can also help you with support and advice about benefits and work, wherever you are in the UK.

Other places to find support

The Blue Badge scheme is for drivers or passengers with severe mobility problems who have difficulties using public transport. It allows holders of a Blue Badge to park close to where they need to go and operates throughout the UK. It is administered by local authorities, who deal with applications and the issuing of badges.

The Blue Badge scheme is to be extended to hidden disabilities, including autism and mental health conditions. ;

Anyone over two years old automatically qualifies for a Blue Badge if they:

  • are registered blind;
  • receive a War Pensioner’s Mobility supplement;
  • receive the higher rate of the mobility component of Disability Living Allowance, or receicve PIP because you can't walk more than 50 metres;
  • have received a lump sum benefit from the Armed Forces and Reserve Forces Compensation Scheme (within tariff levels 1-8) and have been certified as having a permanent and substantial disability which causes inability to walk or very considerable difficulty in walking

Some people may also be eligible for a badge if they are more than two years old and have a permanent and substantial disability which causes inability to walk or very considerable difficulty in walking. For more details about eligibility see DirectGov or your local authority website.

How to apply

You can apply for a badge online at DirectGov where you will be asked to select which local authority you come under, or you can apply through your local authority/council. Find your local authority's website

Useful links

Please note: these are not alternatives to medical treatment, they are complementary to medical treatment. In other words these are extra to medical treatment.

Rainbow. Photo by Martyn Gorman.There is a wide variety of complementary therapies, ranging from ancient systems of medicine, such as acupuncture, to treatments such as massage and aromatherapy. What the therapies have in common is a view that concentrates on the whole person, the 'holistic' approach. They often also require an active participation in making lifestyle changes, for example to diet, exercise or positive thinking.

The list of therapies below is neither an endorsement of their effectiveness, nor a suggestion that they should be tried. It is simply a list of common therapies which are available with contact details should you wish to look into them. What is important when starting anything is that you consult your GP or medical practitioner and that you look for a registered practioner.

  • Most of the websites listed have a 'Find A Practitioner' search, so you can find a registered complementary therapist near you. Plus we have suggestions about how to below.
  • At our Norton Street Information Centre we have factsheets about complementary therapies and different conditions. Please check here, or contact our Information and Advice Officer on 0151 298 2999.

Disclaimer: Complementary therapies are not an alternative to your current medical treatment. You should talk to your doctor before starting any complementary therapy.

  • Acupuncture
    Involves inserting fine needles into specific points in your body, to stimulate the healing process and relieve pain.
    British Acupunture Council www.acupuncture.org.uk
  • Alexander Technique
    Helps people to learn to re-align their body, to release tension and prevent poor posture and associated problems.
    Society of Teachers of the Alexander Technique www.stat.org.uk
  • Aromatherapy
    Essential oils of plants are used to massage the body, or to inhale.
    International Council of Professional Aromatherapists www.ifaroma.org
  • Art Therapy
    Art Therapy is a form of psychotherapy that uses art media as its primary mode of communication.
    British Association of Art Therapists www.baat.org
  • Chiropractic
    Manipulation of the spine and joints to restore alignment.
    College of Chiropractors www.colchiro.org.uk
  • Dance Movement Therapy
    Dance Movement Psychotherapy is the psychotherapeutic use of movement and dance through which a person can engage creatively in a process to further their emotional, cognitive, physical and social integration.
    Association for Dance Movement  Psychotherapy UK www.admp.org.uk
  • Herbalism
    Medical herbalists are health care providers trained in conventional medical diagnosis who use plant-based medicines to treat their patients.
    National Institute of Medical Herbalists www.nimh.org.uk
  • Hyperbaric oxygen therapy
    Involves breathing pure oxygen at higher than atmospheric pressures in an enclosed chamber.
    Hyperbaric Oxygen Treatment Trust www.hyperbaricoxygentherapy.org.uk
  • Hypnotherapy
    A 'talking therapy' or form of counselling, based on conversation and suggestions made under hypnosis or trance.
    National Hypnotherapy Society  www.nationalhypnotherapysociety.org
  • Indian Head Massage
    The Association of Indian Head Massage (AIHM) is a specialist group of practitioners and tutors under the umbrella of the Association of Reflexologists.
    The Association of Indian Head Massage http://massagetherapy.co.uk/therapies-information/treatment-descriptions/indian-head-massage
  • Massage
    A treatment that involves rubbing or kneading the muscles, either for medical or therapeutic purposes, or simply as an aid to relaxation.
    General Council for Massage Therapy www.gcmt.org.uk
  • Meditation
    An ancient method of relaxation which breaks the continuing cycles of stress patterns.
    British Meditation Society www.britishmeditationsociety.org
  • Mindfulness
    A mind-body approach to wellbeing that can help you change the way you think about experiences and reduce stress and anxiety.
    Mental Health Foundation www.bemindful.co.uk
  • Music Therapy
    People work with a wide range of accessible instruments and their voices to create a musical language which reflects their emotional and physical condition.
    British Association for Music Therapy www.bamt.org
  • Osteopathy
    Focuses on the joints, muscles and ligaments and aims to diagnose and treat any mechanical problems affecting the body by massage and manipulation.
    General Osteopathic Council www.osteopathy.org.uk
  • Reading Well
    'Books on Prescription' helps you to understand and manage your health and wellbeing through helpful reading.
    Reading Agency https://readingagency.org.uk/adults/quick-guides/reading-well/
  • Reflexology
    Involves massaging the feet or hands, applying pressure to reflex points that correspond to all parts of the body. A relaxing therapy, especially suited to problems related to stress.
    British Reflexology Association www.britreflex.co.uk  ;
    Association of Reflexologists www.aor.org.uk
  • Reiki
    A system of natural healing, which involves non-intrusive touch on the various areas of the body in order to channel the 'life energy' from practitioner  to recipient.
    Reiki Association www.reikiassociation.org.uk
  • Shiatsu
    A type of massage based on the idea that good health depends on a balanced flow of energy through specific channels of the body.
    Shiatsu Society www.shiatsusociety.org
  • Tai Chi
    A meditative form of movement, which can be practised on many levels. Can help with relaxation, stress relief and personal growth.
    Tai Chi Union for Great Britain www.taichiunion.com
  • Walking
    Walking reduces the risks of many diseases, for example: heart disease, osteoporosis, certain cancers, diabetes and .
    Walking for Health www.walkingforhealth.org.uk
  • Yoga
    Good for suppleness and strengthening body muscles, yoga is an excellent form of exercise. It will help control movements and breathing, and will encourage muscle relaxation.
    Yoga Biomedical Trust www.yogatherapy.org

Find out more

Visit our Information Centre to read Complemenary Healthcare: A guide for patients.

Many of the links above will help you find a therapist. Plus you could find out more if you:

National organisations

Photo © Copyright Martyn Gormann and licensed for reuse under this Creative Commons Licence.

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Chronic pain is a common problem in many neurological conditions. Try asking your GP for help, perhaps this might include physiotherapy, or for a referral to a pain clinic.

Complementary therapies might help you to manage better, and counselling might help as well. Counselling is also available at our centre in Liverpool.

Living With Chronic Pain : The Complete Health Guide to the Causes and Cures for Chronic Pain Our library in Liverpool has lots of useful information about chronic pain, including the book Living With Chronic Pain : The Complete Health Guide to the Causes and Cures for Chronic Pain by Jennifer Schneder.

Do not leave home if you or someone you live with has symptoms of coronavirus

link: Coronavirus outbreak FAQs: what you can and can't do (Gov.uk)
link: Easy-Read guide to Coronavirus from Mencap)
link: Stay safe from coronavirus (Easy-Read, Keep Safe UK)
link: information in BSL from the NHS
link: NHS guidance in other languages
link: Video about COVID-19 in Hindi
link: Help for people with a learning disability, autism or both, to use NHS 111 (video by NHS England)

Local restrictions in Liverpool (Liverpool City Council, 22nd September, 2020)


 A coronavirus is a type of virus. The symptoms of the coronavirus (COVID-19 or Novel Coronavirus) are:

  • a new, continuous cough - this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)
  • a high temperature - this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
  • loss or change to your sense of smell or taste

You can spread the virus even if you don’t have symptoms.

Stay at home for at least 10 days if you have symptoms of coronavirus. Yoou must arrange for a test to check if you have the coronavirus. Ask for a test as soon as you have the symptoms - do not wait. Self-isolate if you have symptoms, or someone you live with has symptoms.

Info updated May 28th from: NHS England and Gov.UK

Emergency Care: It’s really important that for emergencies like suspected stroke or heart attack you call 999 straightaway. With conditions like this every second counts – so don’t delay.

Urgent care and advice: If you need urgent care or advice about a medical condition you can still use NHS 111 (call 111 if you can't get help on-line), or contact your GP practice for help. For BSL use this video interpreter service for NHS 111. Whether you are concerned about a new health problem, or you have a long-term condition and your symptoms get worse, don’t put off getting in touch.

Can I go on holiday in the UK? (Visit England, June 2020)

 Travel advice: coronavirus  (COVID-19) (Gov.UK, June 2020)

Coronavirus (COVID-19): safer travel guidance for passengers (Gov.UK, July 2020)

Coronavirus advice for customers (ABTA, Association of British Travel Agents, June 2020)

Wash your hands

"Washing your hands is one of the easiest ways to protect yourself and others from illnesses such as food poisoning and flu." Info from: NHS

"Wash your hands more often than usual, for 20 seconds using soap and hot water, particularly after coughing, sneezing and blowing your nose, or after being in public areas where other people are doing so. Use hand sanitiser if that’s all you have access to." Info from: Public Health England

At The Brain Charity

The Brain Charity can provide you with help and support for finding employment when you have a long-term condition. We can also help you with benefits advice and legal advice.

Have a look at our employment Frequently Asked Questions.

Here we have listed links to other useful sources of information and support:

  • Coronavirus - what it means for you
    guidance from Citizens Advice on work and staying off sick
    Website: citizensadvice.org.uk/health/coronavirus-what-it-means-for-you
  • Coronavirus (COVID-19): advice for employers and employees from ACAS
  • Online networking events (Eventbrite)
  • The Equality and Human Rights Commission (EHRC) provides advice and guidance on rights, responsibilities and good practice, based on equality law and human rights.
    Website: equalityhumanrights.com
  • The Equality Commission (Northern Ireland)
    The Equality Commission provides advice and information about the Disability Discrimination Act in Northern Ireland.
    Tel: 028 90 500 600
    Website: equalityni.org
  • Law Centres (England, Scotland and Wales)
    Law Centres provide free legal advice and representation to disadvantaged people.
    Tel: See your local Phone Book thephonebook.bt.com/publisha.content/en/index.publisha
    Website: lawcentres.org.uk
  • ACAS (Advisory, Conciliation and Arbitration Service) (England, Scotland and Wales)
    span title="A-Cass">ACAS aims to improve organisations and working life through better employment relations. They offer free advice about employment rights.
    Tel: 0300 123 1100
    Website: acas.org.uk
  • Disability Law Services
    Disability Law Services offer advice and information about employment law to disabled people.
    Tel: 020 7791 9800
    Website: dls.org.uk
  • Jobcentre Plus
    Tel: See your local Phone Book thephonebook.bt.com/publisha.content/en/index.publisha
    Website: direct.gov.uk (search for Jobcentre Plus)
  • The Health and Safety Executive (HSE)
    HSE can provide general information and guidance for employers about work-related health and safety issues. They also offer a free leaflet Five steps to risk assessment, which aims to help employers do their own risk assessments. This can be downloaded from their website. There is also a specific section about employing disabled people on the HSE website.
    Website: hse.gov.uk
  • Disability Rights UK
    Disability Rights UK has published an employment skills guide for people with newly acquired disabilities or health conditions.
    Website: disabilityrightsuk.org
  • The Business Disability Forum (BDF) is an employer organisation that offers information, support and advice on disability as it affects business. It can help employers to make sure that their online recruitment tools and processes are fully accessible for disabled people.
    Website: businessdisabilityforum.org.uk
  • Clear Talents can help organisations identify and manage reasonable adjustments for job applicants, employees and students. It is free to use for applicants.
    Website: cleartalents.com
  • The British Association for Supported Employment (BASE) is the national trade association involved in securing employment for disabled people. The website offers guidance for employers on disability and work. BASE members work closely with disabled jobseekers and employers to help find sustainable work for the disabled person.
    Website: base-uk.org
  • The Disability Action Alliance brings together disabled people’s organisations with other organisations to work in partnership to change the lives of disabled people.
    Website:  disabilityactionalliance.org.uk
  • The Mental Health Foundation is a leading mental health charity for research, policy and improving services. It offers a range of training and courses for individuals and employers. Remploy Employment Services provides wide ranging support to help employers to recruit and retain talented and motivated disabled people.
    Website:  mentalhealth.org.uk/our-work/training
  • Remploy Employment Services provides wide-ranging support to help employers to recruit and train talented and motivated disabled people.
    Website:  remploy.co.uk/info/20013/support_my_employees
  • The Do-IT Profiler has resources for employers to help them to understand specific learning disabilities and their relevance to the workplace.
    Website: https://doitprofiler.com

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