The European Brain Council has declared 2014 as the European Year of the Brain, a programme to raise awareness and improve education about all brain disorders, such as Parkinson’s disease, Epilepsy, Restless Leg Syndrome and Narcolepsy.
As a science skills leader with a strong heritage in providing medicines for conditions of the central nervous system, UCB will be supporting this initiative through raising awareness, educating and challenging the current perceptions around brain-related illnesses.
Today, people all over the globe will be celebrating World Sleep Day. This annual event is organised by the World Association of Sleep Medicine (WASM), whose mission is to advance sleep health worldwide. This milestone is an opportunity to celebrate sleep and a call to action on the important issues related to sleep.
We spend about a third of our lives doing it, but why do we need sleep? Sleep plays a vital role in good health and well-being throughout your life. Getting enough quality sleep at the right times can help protect your mental health, physical health, quality of life, and safety.
However, for approximately 25,000 people in the UK affected by the rare and chronic neurological condition, narcolepsy, the brains ability to regulate normal sleep-wake cycle is affected and can lead to symptoms such as disturbed night-time sleep and excessive sleepiness throughout the day.
On Friday, March 14, 2014, World Sleep Day is celebrated all over the globe. This annual event is a celebration of sleep and a call to action on important issues related to sleep.
Matt O’Neill. Chairman of Narcolepsy UK said “World Sleep Day helps to raise awareness and support for chronic neurological conditions such as Narcolepsy. Narcolepsy is a complex condition and it can be hard to recognise, with patients often experiencing delays from the onset of symptoms to diagnosis. Misdiagnosis can often delay correct referral and treatment, and for some patients, diagnosis can take up to a decade. It is important to raise awareness of Narcolepsy, so that both the medical community and the general public are more aware of the key symptoms and can recognise the condition to push for earlier diagnosis and treatment.”
He added that “Narcolepsy can be a disabling condition and misdiagnosis can be devastating for the patient, their families and friends. Terminology surrounding the condition does not effectively describe the degree of impairment individuals may suffer, for example sleep paralysis, hallucinations on both waking and falling asleep can be terrifying, as can periods of automatic behaviour.
Overall the impact of the condition can affect every aspect of daily life, at home, in the workplace or at school. It can leave patients feeling overwhelmed, impacting relationships and general wellbeing. At Narcolepsy UK our work is focused on advocacy on behalf of individuals, assisting with schooling, work and access to the correct health treatments and social benefits.”
Many cases of narcolepsy are now known to be caused by an autoimmune response to an antibody called trib 2. The trib 2 antibodies attack the areas of the brain that produce orexin (hypocretin). The attack leads to a deficiency in orexin, which results in narcolepsy and, in particular, narcolepsy with cataplexy (temporary muscle weakness).
Cataplexy attacks can be frightening for people with narcolepsy. These are defined by as a sudden loss of voluntary muscle tone, with preserved consciousness, triggered by emotion. The emotional stimulus may be, for example, laughter, pleasure, anger or excitement and the attacks can last just a few seconds or many minutes.
Upon carrying out a series of tests, Swiss scientists found people with narcolepsy had a significant number of trib 2 antibodies compared with people who did not have narcolepsy. These research results help explain the cause of narcolepsy in many cases. However, they do not explain why some people with the condition still produce near-normal levels of orexin.
Both men and women are affected equally by narcolepsy and the symptoms often begin during adolescence, although the condition is usually diagnosed when a person is between 20 and 40.
Regular sleep is organised into a pattern of Rapid Eye Movement (REM) and non-REM stages. However, in narcoleptic sufferers the nocturnal sleep pattern is much more fragmented and they typically experience numerous awakenings. REM sleep can occur very quickly during the night or day, producing unusual phenomena such as hallucinations.
While there is no specific cure for narcolepsy, symptoms can be managed through lifestyle changes and treatment options.
For further information and to find out more about Narcolepsy, please visit: Narcolepsy.org.uk.