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 http://sarcoidosisuk.org/support/support-groups

Online resources Sarcoidosis (NHS Choices)
Link opens in new window www.nhs.uk/conditions/sarcoidosis/Pages/Introduction.aspx
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
Online resources Sjögren's syndrome (NHS Choices website)
Link opens in new window www.nhs.uk/conditions/sjogrens-syndrome/pages/introduction.as
Sjögren's syndrome (Arthritis Research UK website)
Link opens in new window www.arthritisresearchuk.org/arthritis-information/conditions/sjogrens-syndrome.aspx
Sjögren's Syndrome (PubMed Health website)
Link opens in new window www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0025314
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

Online resources Spina bifida (NHS Choices)
Link opens in new window www.nhs.uk/conditions/spina-bifida/pages/introduction.aspx
Spina bifida (Contact A Family)
Link opens in new window www.cafamily.org.uk/medical-information/conditions/s/spina-bifida/?page=3
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

Online resources Spinal cord tumors (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window www.ninds.nih.gov/disorders/brainandspinaltumors/brainandspinaltumors.htm
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

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

News and Events

Online resources MediKidz explain Spinal Cord Injury
Link opens in new window www.medikidz.com/gb-en/shop/brain-eyes-nerves/meditotz-explain-spinal-cord-injury
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.

heelie Power: A Book for young people about growing up with a spinal cord injuryVisit our library to read Wheelie Power: A Book for young people about growing up with a spinal cord injury compiled by Lynne Punchard for the Spinal Injuries Association. 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 Stroke
Related to/Also known as  
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 www.stroke.org.uk/clubs


UK Stroke Forum
Link opens in new window www.stroke.org.uk/node/11779
Different Strokes (for younger stroke survivors)
Helpline: 0845 130 7172
Link opens in new window www.differentstrokes.co.uk
Find your local support group:
Link opens in new window www.google.com/maps/d/viewer?msa=0&mid=1yCjFEGzVfm9K1KJ8REbntFeEDWc
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 www.wired.co.uk/magazine/archive/2014/05/features/game-your-brain

Stroke (British Deaf Association video with BSL and text)
Link opens in new window www.bda.org.uk/health-stroke

News and events  
Our resources

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

Visit our library to read The Successful Stroke Survivor: The new guide to functional recovery from stroke by Tom Balchin. 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 Foundation (UK)
Link opens in new window www.sturgeweber.org.uk

Tel: 01392 464675

Online resources Sturge-Weber syndrome (Contact A Family website)
Link opens in new window www.cafamily.org.uk/medical-information/conditions/s/sturge-weber-syndrome/?page=4&f=S
Sturge-Weber syndrome (Epilepsy Action)
Link opens in new window www.epilepsy.org.uk/info/syndromes/sturge-weber-syndrome

Sturge-Weber Syndrome Information Page (U.S. National Institute of Neurological Disorders and Stroke website)
Link opens in new window www.ninds.nih.gov/disorders/sturge_weber/sturge_weber.htm
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
Symptoms of Subarachnoid Haemorrhage
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
Online resources Subarachnoid haemorrhage (NHS Choices)
Link opens in new window www.nhs.uk/conditions/subarachnoid-haemorrhage/pages/introduction.aspx
Subarachnoid haemorrhage (Brain & Spine Foundation)
Link opens in new window www.brainandspine.org.uk/subarachnoid-haemorrhage
Subarachnoid haemorrhage (Salford Royal NHS Foundation Trust)
Link opens in new window www.srft.nhs.uk/about-us/depts/sub-arachnoid-haemorrhage
News and events  
Our resources

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 Subarachnoid Haemorrhage by the neurologists M. Vermeulen, K.W. Lindsay and J. Van Gijn. 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 http://brainandspine.us11.list-manage.com/track/click?u=e1409eb1a86bc774972f76444&id=03248e0601&e=7dd64cd49a

News and events  
Online resources Arnold-Chiari malformation and driving (Gov.uk website)
Link opens in new window www.gov.uk/arnold-chiari-malformation-and-driving
Chiari Malformation (NHS Choices)
Link opens in new window www.nhs.uk/conditions/chiari-malformation/pages/introduction.aspx

Syringomyelia Fact Sheet (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window www.ninds.nih.gov/disorders/syringomyelia/detail_syringomyelia.htm


Syringomyelia (Contact A Family)
Link opens in new window www.cafamily.org.uk/medical-information/conditions/s/syringomyelia/?page=5&f=S
Chiari malformations (Brain & Spine Foundation)
Link opens in new window www.brainandspine.org.uk/chiari-malformations
Chiari malformation (Medline Plus website)
Link opens in new window http://tinyurl.com/ngd5www
Our resources

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

This includes copies of the booklet prepared by neuro-surgeon Graham Flint, called Syringomyelia & Hindbrain Hernia (Chiari Malformation): An explanation for patients, relatives & carers, published by The Ann Conroy Trust.

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/


St. Thomas' 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

Online resources

Lupus (NHS Choices)Link opens in new window
www.nhs.uk/conditions/Lupus/Pages/Introduction.aspx


 Lupus (SLE) (Arthritis Research UK) Link opens in new window
www.arthritisresearchuk.org/arthritis-information/conditions/lupus.aspx

News and events October is Lupus Awareness Month
Link opens in new window www.lupusuk.org.uk/lupus-awareness-month
#THISISLUPUS
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.