Name  Locked-in Syndrome
Related to/Also known as 

Cerebromedullospinal disconnection

Symptoms of Locked-in Syndrome
"Locked-in syndrome is a rare condition where someone is completely paralysed in all parts of their body, apart from the muscles that control eye movement. It can happen because of a number of different conditions such as traumatic brain injury, diseases of the circulatory system and stroke."
Source: Stroke Association https://tinyurl.com/y396u656
Useful national contacts

Stroke Association
Stroke Helpline 0303 3033 100
Find your local support group: Link opens in new window www.stroke.org.uk/finding-support

Headway, the Brain Injury Association
Link opens in new window www.headway.org.uk
Free helpline 0808 800 2244
Find your local support group: Link opens in new window www.headway.org.uk/supporting-you/in-your-area

Children & young people "Parents of world's youngest locked-in syndrome sufferer, nine, reveal heartache over daughter who blinks to communicate" (Daily Mail, August 2012)
Link opens in new window https://tinyurl.com/yxkjazw6
Online resources

Coronavirus (COVID-19) and stroke (Stroke Association)
Link opens in new window www.stroke.org.uk/finding-support/coronavirus-covid-19-and-stroke

Locked-In Syndrome Information Page (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/yy7b8sse

Locked In Syndrome (U.S. National Organization for Rare Disorders)
Link opens in new window https://tinyurl.com/y6vqozsu

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

Completely 'locked-in' patients can communicate (BBC website, February 2017)
Link opens in new window www.bbc.co.uk/news/health-38761461

Locked-in syndrome: rare survivor Richard Marsh recounts his ordeal (The Guardian newspaper website, August 2012)
Link opens in new window https://tinyurl.com/y3r4pap3

Our resources

https://images-na.ssl-images-amazon.com/images/P/1908006641.01._SX900_SCLZZZZZZZ_.jpg The library at the Brain Charity has a range of resources on Locked-in Syndrome and on a wide range of disability related issues.

Visit our library to read our copy of the book Running Free: Breaking out from locked-in syndrome .