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 Sarcoidosis (NHS Choices)
Link opens in new window https://tinyurl.com/lncfbpb
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 Sjögren's syndrome (NHS Choices website)
Link opens in new window https://tinyurl.com/y8worzsz
Sjögren's syndrome (Arthritis Research UK website)
Link opens in new window https://tinyurl.com/zsbyqym
Sjögren's Syndrome (PubMed Health website)
Link opens in new window https://tinyurl.com/yaps4apl
Our resources

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
Find your local association or support group:
Link opens in new window www.shinecharity.org.uk/regionalteams


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
Online resources Spina bifida (NHS Choices)
Link opens in new window https://tinyurl.com/yd9ehdfa
Spina bifida (Contact A Family)
Link opens in new window https://tinyurl.com/y76bqs94
Our resources Below The Belt: Teen-talk: continence, relationships and much more

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

This includes the ASBAH booklet for teenagers 'Below The Belt: Teen-talk: continence, relationships and much more'.

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

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


UK Stroke Forum
Link opens in new window www.stroke.org.uk/node/11779


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
Link opens in new window www.differentstrokes.co.uk
Find your local support group:
Link opens in new window 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 Public Health England's Act FAST campaign


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

"Post-traumatic stress disorder common after stroke" (King's College London)
Link opens in new window https://tinyurl.com/ydh24dzo

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

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 A Family website)
Link opens in new window https://tinyurl.com/ybuh8xfa
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
Helpline: 0800 750 0000
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 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

Subarachnoid 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 Syringomyelia
Related to/Also known as Chiari Malformation
Arnold-Chiari Malformation
Hindbrain Hernia

Symptoms of Syringomyelia

Syringomyelia is a disorder affecting the nervous system, where fluid-filled cavities develop inside the spinal cord. A variety of conditions lead to the formation of syringomyelia cavities. The most common factor is obstruction to the normal flow of CSF (cerebrospinal fluid within the spinal cord). Possible causes include Hindbrain Hernia, also referred to as Chiari Malformation, and spinal cord injury.

Symptoms vary, ranging from neck and arm pain, through to fairly severe disability, with muscle weakness and paralysis.

Types  
Useful national contacts

Ann Conroy Trust
Link opens in new window www.annconroytrust.org
Tel: 0300 111 0004
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Chiari Malformation Group: A space for you (Facebook group of the Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/y8mrr4bo

Children & young people Chiari I Malformation (For Parents) (KidsHealth)
Link opens in new window https://kidshealth.org/en/parents/chiari.html
News and events  
Online resources

Chiari malformation (Brain & Spine Foundation booklet)
Link opens in new window https://tinyurl.com/ydgocl32


Arnold-Chiari malformation and driving (Gov.uk website)
Link opens in new window https://tinyurl.com/ya344pmn


Chiari Malformation (NHS Choices)
Link opens in new window https://tinyurl.com/yc9xsdch

Syringomyelia Fact Sheet (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/yacac285


Syringomyelia (Contact A Family)
Link opens in new window https://tinyurl.com/y8aqg69g
Chiari malformations (Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/c5gm7rk
Chiari malformation (Medline Plus website)
Link opens in new window http://tinyurl.com/ngd5www

Chiari Malformation Patient Information (The Walton Centre NHS Trust)
Link opens in new window https://tinyurl.com/yygoaenp


"Chiari & Syringomyelia: A handbook for patients and their families", American Syringomyelia & Chiari Alliance Project (ASAP).

Our resources Jessica's Journey: One family's experience of chiari malformation in a child

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

This includes the booklet "Jessica's Journey: One family's experience of chiari malformation in a child" by Kirsty Leigh.

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

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

Lupus (SLE) (Arthritis Research UK)
Link opens in new window https://tinyurl.com/q56v9u7

News and events  
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 Tinnitus (NHS Choices)
Link opens in new window https://tinyurl.com/lh8ue4
Tinnitus (Contact A Family)
Link opens in new window https://tinyurl.com/ybpwmbbb
'Complementary therapy for tinnitus - an opinion' (British Tinnitus Association, July 2015)
Link opens in new window https://tinyurl.com/y78rdfxl
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 Tourette'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

Tourette's Syndrome: Joanna's story (NHS Choices video)
Link opens in new window https://tinyurl.com/yast2c9y
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

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 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


Transverse  Myelitis Association (U.S.)
Link opens in new window www.myelitis.org

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

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

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
Find your nearest support group:
Link opens in new window https://tinyurl.com/y8nl62m9
Children & young people Early Years (Tuberous Sclerosis Association)
Link opens in new window www.tuberous-sclerosis.org/early_years.html
Online resources Tuberous Sclerosis (NHS Choices)
Link opens in new window https://tinyurl.com/yb2wzyut

Tuberous Sclerosis Fact Sheet (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/lsrjno


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

News and Events The 100,000 Genomes Project is looking for people with Tuberous Sclerosis for research into their DNA and genes

Link opens in new window www.genomicsengland.co.uk/taking-part

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.

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