Name Meningitis
Related to/Also known as Meningococcal disease

Septicaemia

Symptoms of Meningitis

Meningitis is an inflammation of the lining (meninges) which covers the spinal cord and the brain.

Common symptoms are usually high fever, headache, stiff neck and a red/purple rash which remains when pressed and looked at through a glass tumbler.

Types

Meningitis is usually caused by a bacterial or viral infection, or is occasionally due to a fungal infection.

Viral meningitis can be very unpleasant, but is generally less severe and is usually without long-term effects.

Bacterial meningitis is more serious and, although some do make a full recovery, others may be left with problems such as long-term brain damage, hearing loss and epilepsy.

The meningococcal bacterium that causes meningitis can also cause septicaemia (blood poisoning). If a patient has some symptoms of both meningococcal meningitis and meningococcal septicaemia, then together these two forms of the disease are known as meningococcal disease.

Useful national contacts Meningitis Trust and Meningitis Research Foundation have merged to form
Meningitis Now
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Link opens in new window www.meningitisnow.org
Nurse-staffed Freefone Helpline 0808 80 10 388
Children & young people

Meningitis in children and young people (Meningitis Now)
Link opens in new window https://tinyurl.com/jd6ubqz

Symptoms Checker for Young Adults (Meningitis Research Foundation)
Link opens in new window https://tinyurl.com/y3mspxhq

Michael Rosen's Sad Book (Michael Rosen)
Chronicles Michael’s grief at the death of his son Eddie from meningitis at the age of 19
Link opens in new window www.michaelrosen.co.uk/portfolio/michael-rosens-sad-book

Online resources

If a styedent is feeling unwell, they shouldn't simply assume it's COVID-19 or a hangover, and seek medical help immediately

FAQs on COVID-19 and meningitis
Link opens in new window www.meningitisnow.org/meningitis-explained/what-is-meningitis/faqs-covid-19-and-meningitis/


Meningitis (NHS Choices)
Link opens in new window https://tinyurl.com/y77fpty7


Glass test for meningitis (Meningitis Now)
Link opens in new window https://tinyurl.com/zdt2ymo


 Living with a condition (The Brain Charity)

News and events

Meningitis Now warn students not to assume coronavirus (Meningitis Now, August 2020)
Link opens in new window www.meningitisnow.org/support-us/news-centre/news-stories/students-assume-coronavirus

Men ACWY vaccine (NHS Choices)
Young teenagers and 'fresher' students going to university for the first time are advised to have a vaccination to prevent meningitis W disease.
Link opens in new window https://tinyurl.com/qh2b5me

"New meningitis vaccine for students and children" (BBC Wales, August 2015)
Link opens in new window www.bbc.co.uk/news/uk-wales-33734323

Our resources

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

This includes a copy of the Brain & Spine Foundation's booklet "Meningitis: A fact sheet for patients and carers".

Name  Microcephaly
Related to/Also known as  Microcephaly is a symptom of many different conditions.
Symptoms

"Microcephaly is a rare neurological condition in which a person's head is significantly smaller than expected based on standardized charts."

Source: U.S. National Institutes of Health, Genetic and Rare Diseases Information Center
Link opens in new window https://tinyurl.com/yctd33jc

Types
  • Primary: the brain fails to grow to the correct size during pregnancy
  • Secondary: the brain is the expected size at birth but subsequently fails to grow normally
Source: Current Opinion in Neurobiology 14(1) February 2004
Useful national contacts

Cerebra (charity for children with neurological conditions)
Link opens in new window https://cerebra.org.uk
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Phone: 01267 244200
Post: 2nd Floor Offices, The Lyric Buildings, King Street, Carmarthen, SA31 1BD

Children & young people Zika Virus (KidsHealth)
Link opens in new window https://tinyurl.com/yyak7a5k
News and events  
Online resources

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

'Zika virus' (NHS Choices)
Link opens in new window https://tinyurl.com/hzvrcjp

'Zika virus infection' (The Encephalis Society)
Link opens in new window www.encephalitis.info/zika-virus


 Living with a condition (The Brain Charity)
Our resources The library at the Brain Charity has a range of resources on disability related issues.

Name Migraine
Related to/Also known as See also Cluster Headaches, Vertigo
Symptoms of Migraine Migraine is a debilitating neurological condition, which often strikes without warning. It affects different people in different ways, but common symptoms include an intense, throbbing headache (usually on one-side of the head), sensitivity to light and noise, nausea or vomiting. Visual disturbances, or aura, are also common.
• The British Deaf Association has information in BSL about Migraine.
Types See the Migraine Trust's website:
Link opens in new window https://tinyurl.com/ycauko3s
Useful national contacts

The Migraine Trust (Migraine Action has merged with the Migraine Trust)
Tel: 020 7631 6970
Link opens in new window www.migrainetrust.org

National Migraine Centre
Tel. 020 7251 3322
Link opens in new window www.migraineclinic.org.uk

Children & young people

Young people with migraine (Migraine Trust)
Link opens in new window https://tinyurl.com/yyvx2kn4

Advice for 7 to 12 year olds (Migraine Trust)
Link opens in new window https://tinyurl.com/y6ox598l

Guide for parents and carers (Migraine Trust)
Link opens in new window https://tinyurl.com/zmhzd96

Migraine in children and adolescents (U.K. National Migraine Centre)
Link opens in new window https://tinyurl.com/yyvaxkml

News and events

The Migraine Trust

• The Migraine Trust's ‘State of the Migraine Nation’ project (December 2019)
Link opens in new window https://tinyurl.com/s85zb97

Online resources

What to know about migraine and COVID-19 (American Migraine Foundation)
Link opens in new window https://americanmigrainefoundation.org/resource-library/covid-19-migraine

Top 5 Migraine Self-care Tips Duing Covid-19 Lockdown (National Migraine Centre)
Link opens in new window www.nationalmigrainecentre.org.uk/top-5-migraine-self-care-tips-during-covid-19-lockdown

Migraine (NHS)
Link opens in new window www.nhs.uk/conditions/migraine

Migraine (Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/yyrg5rqb

"The grim reality of migraine care in the UK" Health Service Journal (December 2019)
Link opens in new window https://tinyurl.com/vrncgmj

Migraine Information Page (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/y6f9y2jt

Acupuncture for preventing migraine attacks (Cochrane Evidence)
Link opens in new window https://tinyurl.com/ydxsos

Hemiplegic Migraine (Orofacial Pain website)
Link opens in new window https://tinyurl.com/yxhowvoh

Migraine with Aura (U.K. National Migraine Centre)
Link opens in new window https://tinyurl.com/ugpf9uy


 Living with a condition (The Brain Charity)
Our resources Supporting young migraineursThe library at The Brain Charity has a range of resources on Migraine and on a wide range of disability-related issues.Visit our library to read Migraine Action's info pack "Supporting young migraineurs".

Name Motor Neurone Disease (MND)
Related to/Also known as Motor Neuron Disease
Amyotrophic Lateral Sclerosis (ALS)
Symptoms of Motor Neurone Disease

Motor Neurone Disease is an uncommon disease, which causes a progressive degeneration of the motor system (the nerve cells that controls the muscles). It is a slowly progressive disease, whose common systems include muscle wasting/weakness, muscle cramps and difficulty with swallowing and with speech.

• The British Deaf Association has information in BSL about Motor Neurone Disease.

Types
  • Progressive Muscular Atrophy (PMA)
  • Progressive Bulbar Palsy
  • Primary Lateral Sclerosis
  • Familial MND (Familial ALS/FALS)
  • Juvenile ALS (MND)
Useful national contacts 

Motor Neurone Disease Assocation (MNDA)
Link opens in new window www.mndassociation.org
Helpline: 08457 626262 (local rate)
Find your local branch
Link opens in new window https://tinyurl.com/pxzujdo


MND Scotland
www.mndscotland.org.uk
Tel: 0141 332 3903
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Children & young people 

Children and young people (MNDA)
Info if you are aged up to 18 and you know someone with Motor Neurone Disease.
There is also information for parents and guardians
Link opens in new window https://tinyurl.com/y3p2reek

Online resources

Coronavirus information (MNDA)
Link opens in new window www.mndassociation.org/about-mnd/coronavirus-and-mnd/mnd-and-coronavirus-2

MND and Coronavirus (MNDA)
Link opens in new window www.mndassociation.org/mnd-and-coronavirus


Motor neurone disease (NHS Choices)
Link opens in new window https://tinyurl.com/ptmc38p


Motor neurone disease (Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/c4jpfbn


 Living with a condition (The Brain Charity)
News and events

Motor neurone disease trial offered to hundreds of patients (BBC, January 2020)
Link opens in new window https://tinyurl.com/ttna4ey

Trajectories of Outcome in Neurological Conditions (TONiC) study seeks volunteers
Link opens in new window https://tonic.thewaltoncentre.nhs.uk

Our resources When Someone Close has MND: A workbook for children aged 4 to 10

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

This includes a copy of the MNDA's booklet 'When Someone Close has MND: A workbook for children aged 4 to 10'.

Name Multiple Sclerosis (MS)
Related to/Also known as  
Symptoms of MS

Multiple Sclerosis is the most common disabling neurological disorder affecting young adults. MS occurs as the result of damage to myelin - the protective sheath surrounding nerve fibres of the central nervous system. This damage interferes with messages between the brain and other parts of the body.

• The British Deaf Association has information in BSL about Multiple Sclerosis

Types
  • Relapsing remitting MS
  • Secondary progressive MS
  • Primary progressive MS
Useful national contacts MS Society
Helpline: 0808 800 8000
Link opens in new window www.mssociety.org.uk
Find your local support group:
Link opens in new window https://tinyurl.com/y8ksdy2j

MS Legal Line – 0207 791 9800 option 2. This goes through to Disability Law Service who they work with. They will help advise/support with tribunals. Also help with any employment legal issues.


Multiple Sclerosis Trust
Tel. 01462 476700
Freephone information service 0800 032 3839

Link opens in new window www.mstrust.org.uk


MS-UK
Tel. 0800 783 0518
Link opens in new window www.ms-uk.org
You can call the MS-UK Helpline for free on 0800 783 0518 during weekdays, between 9 a.m. and 5 p.m.


Multiple Sclerosis National Therapy Centres
There are more than 50 centres in Britain and Ireland, including the Neuro Therapy Centre in Cheshire.
Link opens in new window www.msntc.org.uk and
Link opens in new window www.neurotherapycentre.org


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 Young people and MS (MS Trust)
Link opens in new window www.mstrust.org.uk/life-ms/young-people-and-ms
Young people's guide to MS (MS Trust)
Link opens in new window https://tinyurl.com/vgzybdk

Multiple sclerosis (Great Ormond Street Hospital)
Link opens in new window https://tinyurl.com/y228ndj6
Online resources

Coronavirus, Covid-19 and multiple sclerosis (MS Trust)
Link opens in new window www.mstrust.org.uk/a-z/coronavirus-covid-19-and-multiple-sclerosis#will-i-receive-a-letter-from-the-nhs-telling-me-to-shield

COVID-19 coronavirus and MS (MS Society)
Link opens in new window COVID-19 coronavirus and MS

New Italian research on coronavirus and MS (May 2020, MSSociety)
Link opens in new window www.mssociety.org.uk/research/latest-research/latest-research-news-and-blogs/new-research-on-coronavirus-and-ms


MS Trust: Newly diagnosed with Multiple Sclerosis
Link opens in new window https://tinyurl.com/ybow2j8r


Physiotherapy works: Multiple Sclerosis (MS) (Chartered Society of Physiotherapists factsheet)
Link opens in new window https://tinyurl.com/ya73x7n9
Applying for PIP (MS Society)
Link opens in new window https://tinyurl.com/y4ounms2

MS-UK Live Webchat
Link opens in new window www.ms-uk.org/livewebchat


NHS Choices: Multiple Sclerosis
Link opens in new window https://tinyurl.com/ybdgn4uq


NHS Videos: Being diagnosed with multiple sclerosis
Link opens in new window https://tinyurl.com/y7tqpqbv


BBC: What is multiple sclerosis?
Link opens in new window http://www.bbc.co.uk/newsbeat/18490516


MS-UK video
Link opens in new window www.youtube.com/watch?v=IWdXloSD8gs


MS Research Treatment and Education charity
Link opens in new window www.ms-research.org.uk


MS Register
A ground-breaking study designed to increase our understanding of living with MS in the UK
Link opens in new window www.ukmsregister.org

Trigeminal Neuralgia (NORD, U.S. National Organization for Rare Disorders)
Includes details of TN2, 'atypical' or 'symptomatic' Trigeminal Neuralgia
Link opens in new window https://tinyurl.com/y28z9njm

Tumefactive multiple sclerosis (U.S. Genetic and Rare Diseases Information Center)
Link opens in new window https://tinyurl.com/yyz2gxbl


Legal status of cannabis (MS Trust, October 2018)
Link opens in new window https://tinyurl.com/y5fmgm5g

Research published on MS prevelance and ethnicity (MS Society, 2016)
Link opens in new window www.mssociety.org.uk/research/latest-research/latest-research-news-and-blogs/new-research-published-on-ms-prevalence-and-ethnicity

Information about MS in other languages (MS Society)
Link opens in new windowwww.mssociety.org.uk/about-ms/what-is-ms/information-about-ms-in-other-languages


 Living with a condition (The Brain Charity)

News and events

My Garden Party 2020 (Multiple Sclerosis Trust)
Link opens in new window www.mstrust.org.uk/event/my-garden-party

'Medical cannabis now available on NHS' (MS-UK, November 2019)
Link opens in new window http://tinyurl.com/yghdgsfc

'Game changer' treatment for Multiple Sclerosis patients (BBC, March 2018)
Link opens in new window https://tinyurl.com/y79vp8ya

Emerging areas of research: Stem cells (MS Society)
Link opens in new window https://tinyurl.com/y7fktbav

Our resources

Annie & Dan talk about M.S.: a D.V.D. for children under 10The library at The Brain Charity has a range of resources on MS and on a wide range of disability-related issues.

Visit our library to borrow Annie & Dan talk about MS : a DVD for children under 10

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
The Trust's MSA Nurse Specialists support people affected by MSA across the UK and Ireland, providing responsibility loosely around four regions: https://tinyurl.com/yydh6kog
Children & young people Support for young people (Multiple System Atrophy Trust)
Although children and young people do not get MSA they will still be affected by any diagnosis of MSA within the family.
Link opens in new window https://tinyurl.com/y4rkrcpm
Online resources

Coronavirus - Covid-19 (MSA Trust)
Link opens in new window www.msatrust.org.uk/support-for-you/coronavirus-covid-19

Multiple system atrophy (NHS Choices)
Link opens in new window https://tinyurl.com/ycm7kxyt


 Living with a condition (The Brain Charity)
News and Events  
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

Children & young people A guide for parents: children with muscle-wasting conditions (Muscular Dystrophy UK)
An introductory guide for families with a child newly diagnosed with muscular dystrophy or an associated neuromuscular condition
Link opens in new window https://tinyurl.com/y4sxydo3
Online resources

Detailed guidance on risks from coronavirus for people with muscle-wasting conditions (Muscular Dystrophy UK)
Link opens in new window www.musculardystrophyuk.org/news/news/detailed-guidance-on-risks-from-coronavirus

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


 Living with a condition (The Brain Charity)
News and events  
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.

• The British Deaf Association has information in BSL about M.E.

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/get-support-now/find-local-support/local-me-support-groups

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

Children & young people

Children and young people with M.E./CFS (Action for ME)
Link opens in new window www.actionforme.org.uk/children-and-young-people/introduction

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

Online resources

Coronavirus warning as victims staying sick for MONTHS with ‘post-Covid syndrome’ (ME Association, July 2020)
Link opens in new window https://meassociation.org.uk/2020/07/coronavirus-warning-as-victims-staying-sick-for-months-with-post-covid-syndrome

Your benefits during the coronavirus crisis (ME Association)
Link opens in new window www.meassociation.org.uk/wp-content/uploads/MEA-Coronavirus-MECFS-and-Benefits-24.04.20.pdf

 

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


 Living with a condition (The Brain Charity)
News and event May is M.E. Awareness Month
Link opens in new window www.actionforme.org.uk/news/may-is-me-awareness-month-get-involved
Our resources

Living with M.E.: The Chronic/Post-Viral Fatigue SyndromeThe 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 Myaware [formerly Myasthenia Gravis Association]
Web: Link opens in new window www.myaware.org
Free helpline: 0800 919 922
Find your local support group:
Link opens in new window www.myaware.org/find-your-nearest-support-group
Children & young people Jimmy's Story (Myaware)
Link opens in new window www.myaware.org/blog/jimmys-story
Online resources

Coronavirus Information (MyAware)
Link opens in new window www.myaware.org/coronavirus-information

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


 Living with a condition (The Brain Charity)
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)
Children & young people Narcolepsy in young people (Narcolepsy UK)
Link opens in new window www.narcolepsy.org.uk/narcolepsy-young-people
Online resources Narcolepsy does NOT mean higher risk of coronavirus (Narcolepsy UK)
Link opens in new window www.narcolepsy.org.uk/blog/narcolepsy-does-not-mean-higher-risk-coronavirus

Narcolepsy (NHS Choices)
Link opens in new window https://tinyurl.com/ya2wl5xl
Narcolepsy (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/y9m75zs2
Living With Narcolepsy (BBC Advice website)
Link opens in new window https://tinyurl.com/y992y2u6
 Living with a condition (The Brain Charity)
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 Nerve Tumours UK (formerly the Neurofibromatosis Association)
Link opens in new window https://nervetumours.org.uk
Tel: 020 8439 1234
Children & young people

Childhood Tumour Trust
Charity supporting children and young people with Neurofibromatosis Type 1
Link opens in new window www.childhoodtumourtrust.org.uk

Neurofibromatosis support downloads (Nerve Tumours UK)
Information for children and young people, and for parents and teachers
Link opens in new window https://tinyurl.com/y2p7mlkg

Online resources

 The Brain Changer Arts Project (The Brain Charity)

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

Neurofibromatosis& COVID-19 (Coronavrus) (Nerve Tumors UK)
Link opens in new window https://nervetumours.org.uk/help/neurofibromatosis-covid-19-coronavirus

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

Neurofibromatosis Information Page (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/y78qsyn4


 Living with a condition (The Brain Charity)
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
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

Children & young people Neuromyelitis optica spectrum disorder (Great Ormond Street Hospital)
Link opens in new window https://tinyurl.com/yxdwfnf7
Online resources

GUIDANCE FOR PEOPLE WITH NEUROMYELITIS OPTICA SPECTRUM DISORDER (NMOSD) IN RESPONSE TO THE THREAT OF WIDESPREAD COVID-19 INFECTION (NMO Spectrum UK)
Link opens in new window https://www.nmouk.org/2020/03/23/guidance-for-people-with-neuromyelitis-optica-spectrum-disorder-nmosd-relating-to-covid-19-corona-virus/

Link opens in new window COVID-19 and Rare Neuroimmune Disorders (Siegel Rare Neuroimmune Association)
 Living with a condition (The Brain Charity)
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".

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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
Children & young people GBS and CIDP in children (GAIN)
Link opens in new window https://tinyurl.com/y5cwp67z
Online resources

Coronavirus and diabetes (Diabetes UK)
Link opens in new window www.diabetes.org.uk/about_us/news/coronavirus?utm_source=google%2C%20covid-19&utm_medium=Banner&utm_campaign=banner_covid-19&utm_content=banner_link

COVID 19 (Coronavirus) (GAIN)
Link opens in new window https://gaincharity.org.uk/covid

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/uvyku6w

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


 Living with a condition (The Brain Charity)
News and events Cancer patient trial finds acupuncture lessens chemotherapy neuropathy (BBC, January, 2020)
Link opens in new window https://tinyurl.com/swjqgg5
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. Or have a look for this book in your local library.

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 SarcoidosisUK
Link opens in new window www.sarcoidosisuk.org
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)
Link opens in new window www.sarcoidosisuk.org/information-hub/coronavirushome

Neurosarcoidosis (Royal Free London NHS Foundation Trust)
Link opens in new window https://tinyurl.com/y8fyafwa


 Living with a condition (The Brain Charity)
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
Children & young people

INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19) Advice for patients / parents / guardians (NPUK)
Link opens in new window INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19)

Niemann-Pick Disease  ('Contact', charity for families with disablede children)
Link opens in new window https://tinyurl.com/rbj5v6b

Online resources

Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19 (GOV.UK)
Link opens in new window www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

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

Niemann-Pick Disease (Type A) (Jnetics website)
Link opens in new window www.jnetics.org/jewish_genetic_disorders-ashkenazi_disorders-niemann_pick_disease_type_a

 Living with a condition (The Brain Charity)
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 https://tinyurl.com/y2pevnyy

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

Children & young people

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

Non-epileptic seizures (NES) (Great Ormond Street Hospital for Children)
Link opens in new window https://tinyurl.com/y2mpqdhw

News and events   
Online resources

Coronavirus Information (FND Action)
Link opens in new window www.fndaction.org.uk/coronavirus-information

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.

NHS Sheffield Teaching Hospitals' factsheet
Link opens in new window Taking Control of Your Non-Epileptic Seizures (PDF, 2016)


 Living with a condition (The Brain Charity)
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 attacks".

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

Source: Mind  https://www.mind.org.uk/information-support/types-of-mental-health-problems/obsessive-compulsive-disorder-ocd/#.Xeof7a-nwcA

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

Useful national contacts

• The Brain Charity can offer counselling for OCD

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
• The Liverpool OCD Support Group meets at The Brain Charity

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

Children & young people

PANS PANDAS (UK); PANS is a neuropsychiatric condition in children with OCD
Link opens in new window www.panspandasuk.org
Link opens in new windowwww.facebook.com/panspandasuk
Link opens in new windowwww.instagram.com/pans_pandas_uk
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

 

All About OCD (OCD Youth)
For 16-20 year olds who think they might have OCD
Link opens in new window https://ocdyouth.org/support-info

OCD Youth
News, stories, and blog posts from the OCD Action Youth Advisory Panel.
Link opens in new window https://ocdyouth.org

OCD (Young Minds charityLink opens in new window) https://tinyurl.com/y2ghhlj9

Obsessive-Compulsive Disorder in children and young people: information for parents and carers (Royal College of Psychiatrists)
Link opens in new window https://tinyurl.com/os2gh2o

Online resources

OCD and Coronavirus (OCD UK)
Link opens in new window wwww.ocduk.org/ocd-and-coronavirus

Coronavirus and your wellbeing (Mind)
Link opens in new window www.mind.org.uk/information-support/coronavirus-and-your-wellbeing

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

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

OCD in Diverse Populations Resource Center (International OCD Foundation)
Link opens in new window https://iocdf.org/ocd-bipoc

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

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


Orofacial Pain
Link opens in new window www.orofacialpain.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 Do you know someone whose body always hurts? "Do you know someone whose body always hurts?" (The Walton Centre)
A new guide to helping children understand chronic pain
Link opens in new window https://tinyurl.com/y5ad6tzk

Families and children (Pain Concern)
Link opens in new window http://painconcern.org.uk/resources/families
Chronic pain (Great Ormond Street Hospital)
Link opens in new window https://tinyurl.com/y39t47un
Why Do I Have Pain? (KidsHealth)
https://kidshealth.org/en/kids/pain.html
News and events

Volunteer for pain research (University of Manchester)
Link opens in new window http://research.bmh.manchester.ac.uk/pain/wanttovolunteer

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

Pain Management in Lockdown (Pain Concern)
Link opens in new window https://painconcern.org.uk/pain-management-in-lockdown

Painkillers 'mask, not kill' long-term pain (BBC, February 2020)
Link opens in new window www.bbc.co.uk/news/health-51154621

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

People living with Pain (British Pain Society)
Link opens in new window www.britishpainsociety.org/people-with-pain


 Living with a condition (The Brain Charity)
Our resources 0 days off

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

This includes a copy of the book 0 days off by Edward Stevenson, about his struggle with chronic pain.

Name  PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)
Related to/Also known as 
  • PANDAS (Paediatric Autoimmune Neuropyschiatratric Disorders with Streptococcal Infections)
  • Sydenham Chorea, Sydenham's Chorea
  • OCD, ADHD
Symptoms of PANS and PANDAS

"PANS is a neuropsychiatric condition which is triggered by a misdirected immune response which results in an inflammation of a child's brain."

Source: PANS PANDAS UK www.panspandasuk.org/pans-pandas

"PANDAS is a subset of PANS.  Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in an inflammation of a child's brain.

"Usually starting with an acute onset of obsessive compulsive disorder and/or tics, particularly multiple, complex or unusual tics."

Source: PANS PANDAS UK www.panspandasuk.org/pans-pandas

"Sydenham chorea is a movement disorder occurring in conjunction with rheumatic fever, an inflammatory condition that may develop in children after an infection with Streptococcus A bacteria.

"Chorea describes a disorder of constant, abrupt, involuntary movements and this is a common symptom. Muscle weakness is present in all affected individuals with varying severity. Difficulties with eye movements, voice, and hand movements also occur. Swings in mood and other disturbances of feelings have been described. Children may develop features of obsessive compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD), although the full disorder (known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections or PANDAS), might not develop."

Source: Contact, charity for families with disabled children https://contact.org.uk/advice-and-support/health-medical-information/conditions/s/sydenham-chorea/?page=5&f=S

Useful national contacts

PANS PANDAS UK
Link opens in new window www.panspandasuk.org
Link opens in new windowwww.facebook.com/panspandasuk
Link opens in new windowwww.instagram.com/pans_pandas_uk
Email This email address is being protected from spambots. You need JavaScript enabled to view it.

Contact, charity for families with disabled children
free helpline 0808 808 3555
Link opens in new window https://contact.org.uk

Online resources

 The Brain Changer Arts Project (The Brain Charity)

Pediatric acute-onset neuropsychiatric syndrome (U.S. Genetic and Rare Diseases Information Center)
Link opens in new window https://rarediseases.info.nih.gov/diseases/13087/pediatric-acute-onset-neuropsychiatric-syndrome

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) Care (Stanford Hospital, U.S.)
Link opens in new window https://med.stanford.edu/pans.html

PANDAS - Questions and answers (U.S. National Institute for Mental Health)
Link opens in new window https://www.nimh.nih.gov/health/publications/pandas/index.shtml

Pediatric autoimmune neuropsychiatric disorders associated with Streptococcus infections (U.S. Genetic and Rare Diseases Information Center)
Link opens in new window https://rarediseases.info.nih.gov/diseases/7312/pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcus-infections

Sydenham Chorea (U.S. National Organization for Rare Disorders)
Link opens in new window https://rarediseases.org/rare-diseases/sydenham-chorea/

Sydenham Chorea (Contact, charity for families with disabled children)
Link opens in new window https://contact.org.uk/advice-and-support/health-medical-information/conditions/s/sydenham-chorea/

News and events

"These children were told they have autism and mental health problems but the cause was a bug – and ‘thousands’ like them are being misdiagnosed" (iNews, September 2018)
Link opens in new window https://inews.co.uk/inews-lifestyle/people/autism-adhd-mental-health-problems-bug-thousands-misdiagnosed-pandas-199848

Our resources

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

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.

• The British Deaf Association has information in BSL about Parkinson's.

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
• The Liverpool Central Parkinson's UK Support Group meets at The Brain Charity


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


Children & young people

Talking to children and teenagers (Parkinson's UK)
Link opens in new window https://tinyurl.com/y3e3nxge

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

Online resources

Understanding Coronavirus and Parkinson's (Parkinson's UK)
Link opens in new window www.parkinsons.org.uk/news/understanding-coronavirus-and-parkinsons

Dance for Parkinson's (English National Ballet on YouTube)
www.ballet.org.uk/project/dance-for-parkinsons

Parkinson's disease (NHS website)
Link opens in new window www.nhs.uk/conditions/parkinsons-disease


Muscle cramps and dystonia (Parkinson's UK)
Link opens in new window https://tinyurl.com/y49j24ya


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


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


Understanding Parkinson's (U.S. Parkinson's Foundation)
Link opens in new window www.parkinson.org/understanding-parkinsons
information in Accessible Formats and Other Languages (Parkinson's UK)
Link opens in new window www.parkinsons.org.uk/information-and-support/accessible-formats-and-other-languages
 Living with a condition (The Brain Charity)
News and events

Patient Online Survey: Swallowing difficulties in people with Parkinson's disease (NCEPOD, January 2020)
The survey will lead to a report for healthcare professionals on how they can improve care
Link opens in new window https://tinyurl.com/ujgkytr

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. For example, visitors to our library can read lots about diet and Parkinson's.

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 look in your local library.

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.
  • Diabetes Insipidus or Vasopressin Insufficiency: This condition should not be confused with Diabetes Mellitus
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

Children & young people

Advice for parents (Pituitary Foundation)
Link opens in new window https://tinyurl.com/u4o997r

Children (The Pituitary Foundation)
Other useful links
Link opens in new window https://tinyurl.com/uqrrx8o

Living with Diabetes Insipidus (for teens) (The Pituitary Foundation)
Link opens in new window https://tinyurl.com/wr3q2kx
Online resources

Coronavirus Advice (The Pituitary Foundation)
Link opens in new window Coronavirus Advice

Diabetes insipidus awareness card (Pituitary Foundation)
Link opens in new window https://pituitary.org.uk/information/publications/essential-free-publications/diabetes-insipidus-awareness-card/

Pituitary disorders (Contact, charity for families with disabled children)
Link opens in new window https://tinyurl.com/qu7j77e

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


 Living with a condition (The Brain Charity)
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
Children & young people Patients and Parents (Juvenile Dermatomyositis Research Centre)
Link opens in new window https://tinyurl.com/y3zp6edq
Online resources Coronavirus update from Myositis UK (Myositis UK )
Link opens in new window www.myositis.org.uk/2020/03/19/coronavirus-update-from-myositis-uk

Myositis (polymyositis and dermatomyositis) (NHS Choices website)
Link opens in new window https://tinyurl.com/y7evq6kj
 Living with a condition (The Brain Charity)
Our resources Teddy-Bo's Feeling Tired: A Story all about living with myositis

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

Visit our library to read Teddy-Bo's Feeling Tired: A Story all about living with myositis

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
Children & young people Polio: What happens next? (Great Ormond Street Hospital for Children)
Link opens in new window https://tinyurl.com/y4ywbncm
Online resources

Coronavirus and Polio (British Polio Fellowship)
www.britishpolio.org.uk/about-2

Post-polio syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/ycsn6q4o

Polio (NHS Choices)
Link opens in new window www.nhs.uk/conditions/polio


 Living with a condition (The Brain Charity)
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

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

See also: Functional neurological disorder

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/y8k32fnk/p>

Types
  • PTSD
  • Complex PTSD
Useful national contacts

• The Brain Charity can offer counselling for PTSD

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

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

Children & young people

Symptoms of PTSD in children and adolescents (PTSD UK)
Link opens in new window https://tinyurl.com/yxhcjq43

PTSD (Young Minds charity for children and young people)
Link opens in new windowhttps://tinyurl.com/y4htd8td

Children and Trauma (ASSIST Trauma Care)
Link opens in new window https://tinyurl.com/y3w4xvlm

Online resources

Online self-help resources during COVID-19 (Combat Stress)
Link opens in new window www.combatstress.org.uk/mental-health-support-during-covid-19

Coronavirus and your mental health (Mind)
Link opens in new window www.mind.org.uk/information-support/coronavirus

Mask anxiety, face coverings and mental health (Mind)
Link opens in new window www.mind.org.uk/information-support/coronavirus/mask-anxiety-face-coverings-and-mental-health

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


 Living with a condition (The Brain Charity)

News andevents

Coronavirus: Front-line NHS staff 'at risk of PTSD' (BBC, May 2020)
Link opens in new window www.bbc.co.uk/news/uk-52258217

 

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

Our resources Post-traumatic Stress Disorder (PTSD): the treatment of PTSD in adults and children

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 NICE (National Institute for Clinical Excellence) guidlines 'Post-traumatic Stress Disorder (PTSD): the treatment of PTSD in adults and children in adults and children'.

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 PWSA-UK (Prader-Willi Syndrome Association)
Link opens in new window www.pwsa.co.uk
Tel: 01332 365676
Children & young people PWS by age (PWSA-UK)
Link opens in new windowwww.pwsa.co.uk/pws-by-agecfc0767f
Online resources

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

Prader-Willi syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/c7wl5z6
 Living with a condition (The Brain Charity)
News and Events  
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.
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