Narcolepsy Ireland is a voluntary organisation, which was set up to help and support people in Ireland with narcolepsy (and Irish People with narcolepsy all over the world). It provides a source of information and support to their loved ones, carers, employers and friends. We hope that information regarding narcolepsy will be more readily available thanks to this site, and we will always endeavour to update here regularly with the newest research and news from the narcolepsy community. As narcolepsy and cataplexy are rare, there is often a lack of awareness of these life-long conditions. We hope that the information provided on this website will give people a better understanding of this condition and provide insights into the lives of people with narcolepsy. If you suspect you might have narcolepsy we hope that the information on this website will be useful to you. We will endeavour to make public the latest news and research being carried out around the world.
Narcolepsy Ireland intends to play a role in improving the lives of individuals living with narcolepsy and their families through advocacy, education and support. We hope to help advance research into causes and treatments, through shared knowledge, experiences and inclusive community events. Increased understanding and awareness of this life-long condition will undoubtedly improve the daily lives and future prospects for people with narcolepsy and their families.
It is estimated that the current average time to diagnosis of narcolepsy is 6 to 7 years. Narcolepsy Ireland aims to join others around the world to reduce that time through raising awareness and providing education material.
For the Narcolepsy Community
It is estimated that 1 in 2000 people have narcolepsy with cataplexy (narcolepsy type 1). Narcolepsy Ireland aims to provide the resources to find out more about narcolepsy and to gain an understanding of the range of conditions associated with it.
Read about Irish people living with this condition, and share your tips / advice etc. Please get in contact with us if you would like to contribute your story: info@NarcolepsyIreland.com
What Is Narcolepsy?
First let us clearly state: While narcolepsy is a very serious condition it is reasonably manageable with current medications, allowing most people with narcolepsy to lead rewarding lives.
Although narcolepsy is currently incurable and although current medications are not adequate, very positive progress is now taking place towards the creation of drugs which will put the management of the symptoms of narcolepsy somewhat on a par with the management of diabetes by the use of insulin. When this happens narcolepsy will be totally manageable.
So - What is Narcolepsy?
Narcolepsy is a chronic neurological disorder with a range of serious symptoms which includes: continuous extreme tiredness; sleep attacks; very poor quality sleep; cataplexy; sleep paralysis; vivid (often very frightening) hallucinations associated with going to sleep and awakening.
Narcolepsy is a disease which is highly incapacitating and which is poorly understood by both the public and most medical professionals. It is massively under‐diagnosed or very often misdiagnosed. In general, persons with narcolepsy (PWN) comprise a highly neglected community of sufferers. If you are reading this and have already been diagnosed with narcolepsy, you probably have already travelled the long and frustrating road to diagnosis for yourself or for one of your loved ones.
Latest research (2108) shows that the average time it takes for an adult to be diagnosed from the onset of symptoms is 6 years. For children the figure is approximately 2 years. Unless the sufferer is fortunate enough to make an early connection with a consultant sleep specialist who has experience of narcolepsy, the likelihood of a quick diagnosis is very slim.
There are some self diagnostic tests you can take and some very specific symptoms you can look out for to help you decide your situation. That information will be very valuable if you find you have to convince your primary health caregiver that you have a real problem.
Living with Narcolepsy
There is no doubt that narcolepsy can affect your life in ways which make learning and earning much more difficult. Some people with narcolepsy have great success with various treatment methods and live lives that include working full-time and/or attending school/college/university. Most people with narcolepsy (PWN) will require assistance and understanding from their employers and educators to facilitate their nap-schedule (recommended as part of narcolepsy treatment) and in the case of education many require assistance when taking exams and/or while attending lectures (note-taking software for example). These concessions make things much more achievable for people with narcolepsy. Unfortunately, there are still some people with narcolepsy whose symptoms are so severe that working full-time and attending school is not such a sustainable prospect.