Locked-in Syndrome

Name	Locked-in Syndrome
Related to/Also known as	Cerebromedullospinal disconnection Pseudocoma
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 www.stroke.org.uk Stroke Helpline 0303 3033 100 Find your local support group: www.stroke.org.uk/finding-support Headway, the Brain Injury Association www.headway.org.uk Free helpline 0808 800 2244 Find your local support group: 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) https://tinyurl.com/yxkjazw6
Online resources	Coronavirus (COVID-19) and stroke (Stroke Association) 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) https://tinyurl.com/yy7b8sse Locked In Syndrome (U.S. National Organization for Rare Disorders) https://tinyurl.com/y6vqozsu Living with a condition (The Brain Charity)
News and events	Completely 'locked-in' patients can communicate (BBC website, February 2017) www.bbc.co.uk/news/health-38761461 Locked-in syndrome: rare survivor Richard Marsh recounts his ordeal (The Guardian newspaper website, August 2012) https://tinyurl.com/y3r4pap3
Our resources	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 .