KLS Support UK was started in 2011 by three mothers of children suffering from Kleine-Levin Syndrome (KLS).
KLS is a rare disorder characterised by recurrent bouts of excessive sleep associated with reduced understanding of the world and altered behaviour. KLS usually starts in the teenage years but can occur in younger children and adults. Each episode lasts days, weeks or months during which time all normal daily activities stop. Individuals are not able to care for themselves or attend school and work. People with KLS coming out of episodes will have little or no memory of what happened during an episode. Between episodes they have normal sleep, understanding and behaviour. KLS episodes may continue for 10 years or more. KLS is sometimes referred to in the media as “Sleeping Beauty” syndrome.
Having struggled for many years to find a diagnosis for our children and information on how to help them, we decided to set up this group to help other families in the same predicament.
All four trustees are mothers of children with/or recovering from KLS. KLS Support UK is targeted at UK sufferers and their families. We appreciate that there are few groups worldwide specialising in KLS so will endeavour to help those from overseas where possible.
In 2012 KLS Support UK became a small charity which is recognised by HMRC as a charity for tax purposes. We are proud to be associated with The KLS Foundation in America.
There is a vast amount of information and resources on our website and if you have specific medical questions we have medical advisers who can help. The trustees also have a lot of experience of caring for someone with KLS, the medical, school and further education systems. If we do not know the answer we can point you in the right direction for help.
Please make contact through the Contact Us form which is on the website. One of the trustees will get back to you asap.