Name Multiple System Atrophy (MSA)
Related to/Also known as Shy-Drager Syndrome
Symptoms of MSA
MSA is caused by the degeneration of cells in certain areas of the brain, which control different body systems. This cell degeneration causes problems with movement, balance and automatic functions of the body, such as bladder control.
Types  
Useful national contacts Multiple System Atrophy Trust
Link opens in new window www.msatrust.org.uk
Tel: 0207 940 4666
Find your local support group:
Link opens in new window https://tinyurl.com/ycrcjbwa

MSA/PSP Nurse Specialists:
Tel. 0207 940 4666
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.


Scotland, Ireland and North England: Katie Rigg
Tel:  01434 381 932
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

News and Events  
Online resources Multiple system atrophy (NHS Choices)
Link opens in new window https://tinyurl.com/ycm7kxyt
Our resources Carer's Guide: Looking after yourself and the person you care for

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

This includes a copy of the Multiple System Atrophy Trust's booklet "Carer's Guide: Looking after yourself and the person you care for".

Name Muscular Dystrophy
Related to/Also known as  
Symptoms of Muscular Dystrophy
The muscular dystrophies are a group of neuromuscular disorders. These conditions are characterised by the loss of muscle strength, as progressive muscle wasting or nerve deterioration occurs. Many, but not all, are inherited.
Types Please see the Muscular Dystrophy UK website to find details of all types of neuromuscular conditions.
Useful national contacts

Muscular Dystrophy UK
Helpline: 0800 652 6352
Link opens in new window www.muscular-dystrophy.org
Find support near you: Link opens in new window https://tinyurl.com/y9by2kou


Myotonic Dystophy Support Group
Helpline: 0115 987 0080
Link opens in new window www.myotonicdystrophysupportgroup.org


Neuromuscular Centre
charity
Tel: 01606 860911
Link opens in new window www.nmcentre.com

News and events

Go orange for a day! February 1st is Muscular Dysrophy awareness day
Link opens in new window www.musculardystrophyuk.org/go-orange

Online resources Muscular dystrophy (NHS Choices)
Link opens in new window https://tinyurl.com/d8hshaz
Our resources

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

Myotonic Dystrophy: The Facts This includes a copy of the book Myotonic Dystrophy: The Facts.

 

Name Myalgic Encephalomyelitis (ME)
Related to/Also known as Chronic Fatigue Syndrome (CFS)

Post-Viral Fatigue Syndrome (PVFS)

Symptoms of M.E.
M.E. is a potentially chronic and disabling neurological disorder, which is characterised by persistent fatigue and muscle pain. Symptoms can include cognitive problems such as loss of memory and concentration, recurrent sore throat and enlarged neck glands, disturbed sleep patterns and persistent headaches.
Types  
Useful national contacts ACTION for M.E.
Telephone support: 0845 123 2314
Membership/general 0845 123 2380, 9am-5pm
Link opens in new window www.actionforme.org.uk
Find your local support group:
Link opens in new window www.actionforme.org.uk/find-local-services/

M.E. Association
Helpline: 0844 576 5326 (open every day 10am-12noon, 2-4pm, 7-9pm)
Link opens in new window www.meassociation.org.uk


Association of Young People with ME
(support and advice for young people aged from 5-26 and their families)
Hepline 0845 123 2389, 10am-2pm
Link opens in new window www.ayme.org.uk

Online resources

Chronic fatigue syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/yblzrncb

News and events

'Landmark chronic fatigue trial could treat two-thirds' (BBC website, November 2016)
Link opens in new window www.bbc.co.uk/news/health-3782206

'Testing online treatment for chronic fatigue syndrome (CFS/ME)' (AYME website, November 2016)
Link opens in new window http://tinyurl.com/jddsypo
Our resources

Living with M.E.: The Chronic/Post-Viral Fatigue Syndrome The library at The Brain Charity has a range of resources on M.E. and on a wide range of disability-related issues.

Visit our library to read Living with M.E: The chronic/post-viral fatigue syndrome by Dr Charles Shepherd. 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 Myasthenia Gravis
Related to/Also known as  
Symptoms of Myasthenia Gravis
Myasthenia Gravis is an autoimmune disease, which results in a breakdown in communication between nerve and muscle. This results in a loss of effectiveness of the muscle. The progression and severity of the disease vary widely. Some patients only ever develop eye muscle weakness - this is called ocular myasthenia. Others also have more widespread weakness - generalised myasthenia.
Types Ocular Myasthenia Gravis - confined to eye muscles

Generalised Myasthenia Gravis

Useful national contacts My Aware [formerly Myasthenia Gravis Association]
Web: Link opens in new window http://myaware.org
Free helpline: 0800 919 922
Find your local support group:
Link opens in new window https://myaware.org/support-groups
Online resources Myasthenia gravis (NHS Choices)
Link opens in new window https://tinyurl.com/ybsujxfk

Myasthenia gravis (Muscular Dystrophy U.K.)
Link opens in new window https://tinyurl.com/y7l7ovp8


Ocular myasthenia (Eyecare Trust)
Link opens in new window https://tinyurl.com/yajoabxh

Our resources The Mysterious Illness: Myasthenia Gravis

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

This includes the book The Mysterious Illness - Myasthenia Gravis:  My long journey to diagnosis & the daily struggles since an almost fatal surgery, by Hazel Smart.

 

Name Narcolepsy
Related to/Also known as Gelineau's Syndrome
Symptoms of Narcolepsy

Narcolepsy is a neurological disorder of the sleep/waking regulating mechanism, resulting in excessive daytime sleepiness. Its most common manifestation is an irresistible urge to fall asleep, even in circumstances such as in the middle of a meal.

Another usual symptom is a sudden loss of muscular control triggered by amusement, anger or excitement, which is called cataplexy. The effects of cataplexy range from dropping of jaw and slumping of head, to buckling of the legs and even collapse of the whole body; they last for a few seconds or up to many minutes.

Types  
Useful national contacts Narcolepsy UK
Link opens in new window www.narcolepsy.org.uk
Tel: 0845 450 0394 (local call rate)
Online resources Narcolepsy (NHS Choices)
Link opens in new window https://tinyurl.com/ya2wl5xl
Narcolepsy (Contact-A-Family)
Link opens in new window https://tinyurl.com/y9m75zs2
Living With Narcolepsy (BBC Advice website)
Link opens in new window https://tinyurl.com/y992y2u6
Our resources

Narcolepsy: a funny disorder that's no laughing matter Visit our library to read Narcolepsy : a funny disorder that's no laughing matter by Marguerite J. Utley.
 

Name Neurofibromatosis
Related to/Also known as Von Recklinghausen's Disease
Symptoms of Neurofibromatosis
A genetic disorder, mainly of the nervous tissue, causing benign tumours on nerve tissue anywhere in the body.
Types

Neurofibromatosis Type 1 (Nf1) is the most common type, causing tumours (non-malignant and bumps) to form on nerve endings anywhere in the body. Other effects can include learning difficulties, social problems and epilepsy.

 

Neurofibromatosis Type 2 (Nf2) is a much rarer disorder of the nerve tissue, resulting in acoustic neuromas or vestibular Schwannomas on the nerve that takes messages from the ear to the brain. This can then result in progressive deafness and communication problems.

Useful national contacts The Neurofibromatosis Association
Link opens in new window www.nfauk.org
Tel: 020 8439 1234
Online resources

Neurofibromatosis type 1 (NHS Choices)
Link opens in new window https://tinyurl.com/y7f5e9av

Neurofibromatosis type 2 (NHS Choices)
Link opens in new window https://tinyurl.com/y7tukxx5

News and Events  
Our resources

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

Polly's Best Friend: A Booklet for Girls under 10 This includes copies of the Neurofibromatosis Association's booklets for children "Polly's Best Friend: A Booklet for Girls under 10" and "The Winning Goal: A Booklet for Boys under 10".

Name Neuromyelitis Optica (NMO)
Related to/Also known as Devic's disease

Optico-Spinal MS (OSMS): some scientists believe is the same as NMO

Symptoms of NMO NMO is an inflammatory disease of the nervous system, which usually affects only the optic (eyes) nerve and the spinal cord. It can cause a decrease in vision and varying degrees of weakness or paralysis in the legs and arms.
Types  
Useful national contacts

NMO-Spectrum-UK charity
Link opens in new window www.nmo-ukresearchfoundation.org

 

Information at NMOUK NHS Specialised Services website:   Link opens in new window www.nmouk.nhs.uk


Transverse Myelitis Association
Link opens in new window www.myelitis.org.uk
Find your local support group:
Link opens in new window http://supportgroups.myelitis.org.uk/

Online resources Transverse Myelitis (Brain & Spine Foundation)
Link opens in new window www.brainandspine.org.uk/transverse-myelitis
Our resources

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

This includes a copy of the NMO-UK booklet "Living with NMO: A Guide to the condition".

Name  Neuropathy
Related to/Also known as  See also: Guillain-Barré Syndrome, Pain
Symptoms of Neuropathy
Neuropathies are processes affecting nerves, either single nerves or a generalised disorder. Damage occurs to the nerves that travel between the brain and the spinal cord to the muscles, skin and other parts of the body, causing pain. The site and cause of the neuropathic pain varies according to the type of neuropathy.
Types There are many Neuropathies, the most common are:
  • Diabetic Neuropathy
  • Peripheral Neuropathy
  • Sensory Neuropathy
  • Post-Herpetic Neuralgia (PHN)
  • Chronic Relapsing Inflammatory Optic Neuropathy (CRION) 
Useful national contacts  GAIN (Guillain-Barré and Associated Inflammatory Neuropathies)
Link opens in new window www.gaincharity.org.uk
News and events  
Online resources

Diabetic Neuropathy

Diabetes UK
Link opens in new window https://tinyurl.com/y8zx7uk8

Peripheral neuropathy

NHS Choices
Link opens in new window https://tinyurl.com/y8tdq6x9

Patient.info
Link opens in new window https://tinyurl.com/m6un2m5

The Foundation for Peripheral Neuropathy  (U.S.A.)
Link opens in new window www.foundationforpn.org

Our resources

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

You Can Cope with Peripheral Neuropathy: 365 tips for living a better life Visit our library to read You Can Cope with Peripheral Neuropathy: 365 tips for living a better life.

Name Neurosarcoidosis
Related to/Also known as Sarcoidosis
Symptoms of Neurosarcoidosis

"Neurosarcoidosis is a complication of sarcoidosis, in which inflammation occurs in the brain, spinal cord, and other areas of the nervous system.

"Sarcoidosis is a long-term  disorder that affects many parts of the body, mostly the lungs. In a small number of patients, the disease involves some part of the nervous system. This is called neurosarcoidosis."

Source: MedlinePlus
Link opens in new window https://tinyurl.com/67le5

Types  
Useful national contacts SILA (The U.K. Sarcoidosis Charity)
Link opens in new window www.sila.org.uk
Online resources Neurosarcoidosis (Royal Free London NHS Foundation Trust)
Link opens in new window https://tinyurl.com/y8fyafwa
Our resources

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

Visit our library to read our copy of the Sarcoidosis journal article "Neurosarcoidosis" by Elizabeth Graham and D. Geraint James.

Name Niemann-Pick Disease
Related to/Also known as Juvenile dystonic lipidosis
Symptoms of Niemann-Pick Disease
Niemann-Pick (NP) is an inherited metabolic disorder, in which harmful quantities of a fatty substance accumulate in the spleen, liver, lungs, bone marrow and, in some people, the brain.
Types

There are 4 types - A, B, C and D.

  • Type A, Infantile N.P., has its onset in early infancy and results in early death.
  • Type B, Juvenile Non-neuronoplathic NP, involves enlargement of the spleen and liver, which characteristically occurs in pre-teens years.
  • Type C may occur in early life or teens, with enlargement of the spleen and liver, accompanied by progressive loss of speech, ataxia and other problems.
  • Type D - similar to type C, but specifically found in people of Nova Scotia ancestry.
Useful national contacts Niemann-Pick  UK
Helpline: 0191 415 0693
Link opens in new window www.npuk.org
Online resources

Niemann-Pick Type C Suspicion Index
a quick, convenient and easy to use assessment of patients, during or following a consultation
Link opens in new window www.npc-si.com

Niemann-Pick Disease Information Page (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/c2w87a

Our resources Understanding Niemann-Pick Type C Disease: An Overview for parents and those caring for young people

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

This includes copies of the Niemann-Pick Disease Group's booklet "Understanding Niemann-Pick Type C Disease: An Overview for parents and those caring for young people".

Name  Non-Epileptic Attack Disorder (NEAD)
Related to/Also known as

Functional Neurological Disorder

Dissociative Seizures

Symptoms of NEAD
Non-epileptic seizures can look and feel like seizures caused by epilepsy, but they are not actually caused by abnormal electrical activity in the brain, like epileptic seizures. Instead they are either organic or psychogenic in origin. There are a number of tests available that can help to diagnose NEAD and to distinguish epileptic from non-epileptic seizures.
Types  
Useful national contacts

Non Epileptic Attack Disorder (part of FND Action)
Link opens in new window www.nonepilepticattackdisorder.org.uk/non-epileptic-attack-disorder

Epilepsy Action
Freephone helpline: 0808 800 5050
Link opens in new window www.epilepsy.org.uk


NEUROkid information for children and young people diagnosed with NEAD
Link opens in new window www.neurokid.co.uk

News and events   
Online resources

There are useful factsheets available from the Epilepsy Society and Epilepsy Action:

Non-epileptic seizures (Epilepsy Society website)
Link opens in new window https://tinyurl.com/kn68bo
Dissociative seizures (Epilepy Action website)
Link opens in new windowhttps://tinyurl.com/yakgjts7

Information can also be found at the website:
Link opens in new window www.nonepilepticattacks.info
This is a website developed by a group of healthcare professionals interested in developing effective treatments for NEAD. It is designed to provide patients and families with information about the condition, what causes them and what treatments there are, together with self-help information.

Our resources

Taking Control of Your Non-epileptic Seizures The library at The Brain Charity has a range of resources on NEAD and on a wide range of disability-related issues.

This includes a copy of NHS Sheffield Teaching Hospitals' factsheet "Taking Control of Your Non-Epileptic Seizures".

Name  Obsessive Compulsive Disorder (OCD)
Related to/Also known as 

May sometimes be linked with ADHD, Tourette Syndrome, Asperger's Syndrome, or the mental health condition PTSD.

Symptoms of OCD

OCD is a mental health condition. Mental health conditions are problems with the way you think or feel.

Neurological conditions are problems with your brain or nervous system. Neurological conditions can sometimes lead to mental health problems.

"Obsessive compulsive disorder (OCD) is an anxiety disorder. It has two main parts: obsessions and complusions.

  • Obsessions are unwelcome thoughts, images, urges, worries or doubts that repeatedly appear in your mind. They can make you feel very anxious (although some people describe it as 'mental discomfort' rather than anxiety).
  • Compulsions are repetitive activities that you do to reduce the anxiety caused by the obsession. It could be something like repeatedly checking a door is locked, repeating a specific phrase in your head or checking how your body feels."

Link opens in new window Source: Mind https://tinyurl.com/yd2jwlco

Useful National contacts

The Brain Charity can offer counselling for OCD at our centre in Liverpool.

OCD Action
Link opens in new window www.ocdaction.org.uk
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Phone: 0845 390 6232

TOP UK: The OCD and Phobia Charity
Link opens in new window www.topuk.org
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Phone: 01225 571740

Online resources

Obsessive compulsive disorder (OCD) (NHS Choices)
Link opens in new window https://tinyurl.com/yccd9bzg

Obsessive-Compulsive Disorder (Royal College of Psychiatrists)
Link opens in new window https://tinyurl.com/os2gh2o

OCD brains 'are different' (NHS Choices)
Link opens in new window https://tinyurl.com/y8rdn5ye

OCD and PTSD – and the relationship between the two (PTSD UK)
Link opens in new window www.ptsduk.org/ocd-and-ptsd

Obsessive compulsive disorder and driving (GOV.UK)
You must tell the DVLA if your obsessive compulsive disorder affects your driving
Link opens in new window https://tinyurl.com/ya3azqtr

News and events  
Our resources

Obsessive Compulsive Disoder: The Facts The library at The Brain Charity has a range of resources on OCD and on a wide range of disability-related issues. Visit our library to read the book Obsessive Compulsive Disoder: The Facts by Stanley Rachmen and Padmal De Silva.

Or have a Link opens in new window look in your local library for this book.
WorldCat website

Name Pain
Related to/Also known as see also Back Pain
Symptoms Pain is a common feature of many neurological conditions. Learning to cope with pain can help individuals to take control of their conditions.
Types  
Useful national contacts Action on Pain
Link opens in new window www.action-on-pain.co.uk

British Pain Society
Link opens in new window www.britishpainsociety.org


Pain Concern
Link opens in new window www.painconcern.org.uk


Pain Relief Foundation
Link opens in new window www.painrelieffoundation.org.uk


BackCare 
Link opens in new window www.backcare.org.uk


Tame the Pain
Link opens in new window www.tamethepain.co.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
News and events  Medicinal cannabis products to be legalised (BBC, July 26th 2018)
Link opens in new window www.bbc.co.uk/news/health-44968386
Online resources

How to get NHS help for your pain (NHS Choices)
Link opens in new window https://tinyurl.com/pxz3ns4

Physiotherapy works: Chronic pain (Chartered Society of Physiotherapy factsheet)
Link opens in new window https://tinyurl.com/qaazafg

MediKidz explain Chronic Pain
Link opens in new window https://tinyurl.com/y8uvy2zy

Our resources

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

Manage your pain: Practical and Positive Ways of Adapting to Chronic Pain This includes a copy of the book Manage your pain: Practical and Positive Ways of Adapting to Chronic Pain by Dr Michael Nicholas. Or look for this book in a library near you Link opens in new window.

Name Parkinson's
Related to/Also known as Idiopathic Parkinson's Disease
Symptoms of Parkinson's
A progressive neurological condition, which can affect talking, walking, swallowing, writing etc. Characterised by slowness in the initiation and performance of movement, and sometimes tremor, usually at rest.
Types  
Useful national contacts

Parkinson's UK
Link opens in new window www.parkinsons.org.uk
Tel: 0808 800 0303
Find a support group near you:
Link opens in new window www.parkinsons.org.uk/content/local-groups


Dance for Parkinson's Network UK
Link opens in new window www.danceforparkinsonsuk.org


Younger People's Groups
Tel. 0808 800 0303
Link opens in new window www.parkinsons.org.uk/youngerpeoplesgroups


News and events  
Online resources

Physiotherapy works: Parkinson's (Chartered Society of Physiotherapists factsheet)
Link opens in new window https://tinyurl.com/nb2bjv8


MediKidz explain Parkinson's Disease
Link opens in new window https://tinyurl.com/y9mkfr3r


Parkinson's Disease (U.S. National Center for Complementary and Integrative Health)
Link opens in new window https://nccih.nih.gov/health/parkinson-disease


Our resources

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

Our Mum has Parkinson's Visit our library to read Our Mum has Parkinson's by Karen Goodall, who was diagnosed with Parkinson's at the age of 32. 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 Pituitary Disorders
Related to/Also known as  
Symptoms of Pituitary Disorders
Disorders of the pituitary gland are relatively rare. The most common problem of the pituitary gland is when a benign tumour develops (a form of pituitary adenoma). Symptoms include headaches and visual problems.
Types

Some of the problems related to the pituitary gland are listed below. For more information see the Pituitary Foundation.

  • Acromegaly is caused by overproduction of the growth hormone in adults.
  • Craniopharyngioma is a rare tumour of the pituitary region, which exerts pressure on the hypothalamus and often on the pituitary gland.
  • Cushings's Disease is a problem arising in the pituitary gland, caused by the overproduction of the hormone ACTH. This leads to the overproduction of cortisol by the adrenal glands.
  • Hypopituitarism is the underproduction of one or more of the hormones in the pituitary gland; most often caused by a benign tumour.
  • Non-functioning tumour is the commonest type of tumour in the pituitary gland. It does not produce any hormones itself, but can cause other problems, such as headaches.
Useful national contacts

Pituitary Foundation
Link opens in new window www.pituitary.org.uk
Support and Information Helpline:  0117 370 1320.
Find your local support group:
Link opens in new window https://tinyurl.com/y9f5tj95

Online resources

Pituitary disorder (Contact-A-Family)
Link opens in new window https://tinyurl.com/yaov98x9

Pituitary tumour and driving: you must tell the DVLA if you have a pituitary tumour
Link opens in new window www.gov.uk/pituitary-tumour-and-driving

News and Events

 Diabetes Insipidus - time to change the name? (Pituitary Foundation, July 2018)
Link opens in new window https://tinyurl.com/y7m5y29d

Our resources Pituittary Life

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

This includes copies of the Pituitary Foundation's magazine Pituitary Life.

Name Polymyositis
Related to/Also known as Myositis
Symptoms of Polymyositis
Polymyositis is an inflammatory muscle disease that causes varying degrees of decreased muscle power. The disease has a gradual onset; the most common symptom is muscle weakness.
Types Dermatomyositis is a related condition where a particular skin rash occurs, along with muscle inflammation.
Useful national contacts Myositis UK
Link opens in new window www.myositis.org.uk
Tel: 02380 449708
Online resources Myositis (polymyositis and dermatomyositis) (NHS Choices website)
Link opens in new window https://tinyurl.com/y7evq6kj
Our resources

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

Myositis: Facts, feelings & future hopes Visit our library to read Myositis: Facts, feelings & future hopes, edited by Jenny Fenton.

Name Post-Polio Syndrome
Related to/Also known as  
Symptoms of Post-Polio Syndrome
'Post-polio syndrome' describes a condition where some polio surviviors re-present (on average 30 years after their original illness) with further deterioration in functional ability, increased pain and increased muscle weakness.
Types  
Useful national contacts British Polio Fellowship
Link opens in new window www.britishpolio.org.uk
Tel: 0800 018 0586
Online resources
Post-polio syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/ycsn6q4o
News and events  
Our resources

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

Post-Polio Syndrome: A guide for Polio survivors & their families Visit our library to read Post-Polio Syndrome: A guide for Polio survivors & their families by Dr Julie K Silver. 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 Post-traumatic stress disorder (PTSD)
Related to

Functional neurological disorder

PTSD may sometimes be caused by Brain Injury, Brain Haemorrhage, Subarachnoid haemorrhage (SAH), or Stroke.

Symptoms of PTSD

PTSD is a mental health condition.  Mental health conditions are problems with the way you think and feel. Neurological conditions are problems with your brain, spine, or nervous system. Neurological conditions can sometimes lead to mental health problems.

"Post-traumatic stress disorder (PTSD) is a type of anxiety disorder which you may develop after being involved in, or witnessing, traumatic events. The condition was first recognised in war veterans and has been known by a variety of names, such as 'shell shock'. But it's not only diagnosed in soldiers – a wide range of traumatic experiences can cause PTSD.

"Symptoms of PTSD include:

  • "Reliving aspects of what happended. This can include vivid flashbacks
  • "Alertness or feeling on edge. This can include panicking when reminded of the trauma.
  • "Avoiding feelings or memories. This can include feeling emotionally numb or cut off from your feelings."

Source: Mind https://tinyurl.com/y8k32fnkLink opens in new window

Types
  • PTSD
  • Complex PTSD
Useful national contacts

The Brain Charity can offer counselling for PTSD at our centre in Liverpool.


PTSD UK
Link opens in new window www.ptsduk.org
National PTSD Helpline tel. 01282 787 172

PTSD Resolution: charity for UK Forces veterans
Link opens in new window http://ptsdresolution.org
Free helpline 0300 302 0551

Combat Stress: UK veterans' mental health charity
Link opens in new window www.combatstress.org.uk
Free 24-hour helpline:  0800 138 1619

ASSIST Trauma Care
Link opens in new window http://assisttraumacare.org.uk
Helpline 01788 560 800
Find your nearest ASSIST therapist:
Link opens in new window http://assisttraumacare.org.uk/contact

Mind: the mental health charity
Link opens in new window www.mind.org.uk
Mind Infoline: 0300 123 3393
Find your local Mind support group:
Link opens in new window https://tinyurl.com/yaat3k8b

Anxiety UK
Link opens in new window www.anxietyuk.org.uk
Tel. 08444 775 774

The Samaritans
Phone free any time on 116 123

Online resources

Post-traumatic stress disorder (PTSD) (NHS Choices)
Link opens in new window https://tinyurl.com/y9rwpvjc

Emotional effects of brain injury (Headway)
Link opens in new window https://tinyurl.com/y92eusgo

National Center for PTSD (U.S. Department for Veterans Affairs)
Link opens in new window www.ptsd.va.gov

Post-traumatic stress disorder: Management (NICE: National Institute for Health and Care Excellence)
Link opens in new window www.nice.org.uk/guidance/CG26

OCD and PTSD – and the relationship between the two (PTSD UK)
Link opens in new window www.ptsduk.org/ocd-and-ptsd

Post traumatic stress disorder (PTSD) and driving (GOV.UK)
You must tell the DVLA if your post-traumatic stress disorder affects your driving
Link opens in new window https://tinyurl.com/y9w9y5kf

News and events

'My dog saved my life' says PTSD sufferer (BBC, May 2018)
Link opens in new window https://tinyurl.com/ybxo39ue

Our resources

Anxiety, Panic and Phobias The library at the Brain Charity has a range of resources on PTSD and on a wide range of disability-related issues.

Visit the library to read our copy of the book Anxiety, Panic and Phobias by Malcolm Lader.

Name Prader-Willi Syndrome
Related to/Also known as HHHO Syndrome
Symptoms of Prader-Willi syndrome
Prader-Willi syndrome is a genetic disorder, which is present from birth. It is characterised by a number of behavioural and psychological features, including low muscle tone, excessive appetite (leading to obesity if not controlled), and immature physical development . Most have borderline or moderate learning difficulties.
Types  
Useful national contacts Prader-Willi Syndrome Association
Link opens in new window www.pwsa.co.uk
Tel: 01332 365676
Online resources Prader-Willi syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/c7wl5z6
Our resources The library at The Brain Charity has a range of resources on Prader-Willi syndrome and on a wide range of disability-related issues.

Name Progressive Supranuclear Palsy (PSP)
Related to/Also known as Steele-Richardson-Olszewski (SRO) Syndrome
Symptoms of PSP PSP is a progressive brain disease, leading to the death of nerve endings (neurons) in the area of the brain controlling balance, vision, movement, speech and swallowing. Symptoms reflect problems in these areas; however, the severity and progression varies considerably from one individual to another.
Types  
Useful national contacts PSP Association
Link opens in new window www.psassociation.org.uk
Tel: 01327 322410
Helpline: 0300 0110 122
Online resources Progressive Supranuclear Palsy (NHS Choices)
Link opens in new window https://tinyurl.com/lpvclo6
Our resources

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

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
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
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 http://w3.cerebra.org.uk
News and events  
Online resources Rett syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/yc3pfvkh
Rett syndrome (Contact A Family)
Link opens in new window https://tinyurl.com/y7rlvqbw
Our resources

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

Rett Disorder and the dveloping brain Visit our library to read Rett Disorder and the Developing Brain, edited by Dr Alison Kerr and Dr Ingegerd Witt Engerström. 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  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

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
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.

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