INTRODUCTION.
As we want to make this information understandable to everybody, the following explanations are put in the simplest terms possible. More in-depth articles and discussions are available deeper within this site and through links from this site to other sites.
Q: WHAT IS NARCOLEPSY?
A: Narcolepsy is a disorder of the brain. It is not a mental illness. It is caused by a known physical change in the brain. It is normally referred to as a chronic neurological disorder, or chronic neurological disease. For those not familiar with such words, “chronic” means “long lasting” - (in this case incurable) ; “neurological” means relating to the nervous system (in this case the brain); and disease or disorder in this instance means that something is not working in the brain the way that it should. Narcolepsy is fundamentally a chronic sleep disorder with a range of very serious effects and symptoms.
Q: HOW SERIOUS IS NARCOLEPSY?
A: Narcolepsy is a serious condition which when undiagnosed (or misdiagnosed) and untreated can have devastating effects on its sufferers. If you, or a loved one, have recently been diagnosed with narcolepsy we fully understand that this can be very frightening and confusing.
Q: IS NARCOLEPSY CURABLE?
A: No. Narcolepsy is incurable, but it is very important to understand that this is a manageable condition, and with proper diagnosis, medication and lifestyle modifications, sufferers can lead a very rewarding and satisfying life.
On the other hand, it would be totally wrong to suggest that this is a trivial condition. The impacts of narcolepsy are severe and people who suffer with narcolepsy will experience significant challenges in their daily living. People with narcolepsy who remain undiagnosed or who are misdiagnosed face real dangers. This cannot be stressed enough - untreated narcolepsy has devastating effects on its sufferers and families.
Q: WHEN DO PEOPLE USUALLY CONTRACT NARCOLEPSY?
A: Narcolepsy generally starts to appear in a gradual way between the ages of 10 and 20, although it can happen at any age. Data from the European Narcolepsy Network suggests that there are clear peaks in onset at ages 15 and 36. Children as young 3 have contracted narcolepsy but also persons in their 50s and beyond.
Q: DOES NARCOLEPSY REDUCE LIFE EXPECTANCY?
A: No. Narcolepsy does not directly affect a person’s life expectancy. However, if undiagnosed and untreated it can severely affect the person's quality of life. It cannot be stressed enough how important it is that any person suffering from narcolepsy be diagnosed promptly and medicated properly.
Historically, narcolepsy has been unrecognised and undiagnosed for many years. As recently as 2010 it is estimated that the average time to diagnose narcolepsy was over 10 years. It is an extraordinary fact that the latest survey in 2018 in the UK shows that it still takes 6 years to diagnose narcolepsy in adults and close to 2 years to diagnose it in children. This is due to a lack of awareness about narcolepsy in the general community and in the medical profession and also due to the serious lack of availability of resources such as sleep clinics and sleep disorder specialists. It is extremely unlikely that outcomes are better in Ireland.
Q: DOES NARCOLEPSY AFFECT QUALITY OF LIFE?
A: Yes. Narcolepsy is a serious disease which if left undiagnosed and untreated can have devastating effects. Even when diagnosed and treated it remains a huge challenge for sufferers and their families.
There is a serious misunderstanding in the general community about this issue. Naturally, not everyone has even heard about narcolepsy and of those who have few understand its implications. Those who have heard of narcolepsy, even those to whom it has been explained, rarely understand how serious it is. Most people continue with the impression that it simply means that the people who are affected by it get tired more easily and sleep a lot more and can fall asleep very suddenly.
A lot of intelligent people think that children who have this “condition” will probably grow out of it and that it’s not something to be unduly concerned about. It is a very sad but true fact that even close family members often totally underestimate the life-changing severity of this incurable disease.
This lack of understanding can be incredibly frustrating and annoying to sufferers and their loved ones. Although narcolepsy is not a mental illness, if it is left untreated or unrecognised its sufferers can easily fall into deep depressions and develop other mental issues which can lead to deeply unhappy lives and, in some case, suicide.
So make no mistake about this: despite the fun sometimes made about it in the movies, narcolepsy is no joke. People with narcolepsy need help and support and understanding. That is the mission of Narcolepsy Ireland - and we need you to help us. Please.
Q: DOES NARCOLEPSY AFFECT EVERYONE IN THE SAME WAY?
A: No. Symptoms can vary in intensity from person to person from moderate to extremely severe. Not all of the symptoms are experienced by each sufferer.
Q: WHAT IS THE CORRECT TERM TO DESCRIBE A PERSON WHO SUFFERS WITH NARCOLEPSY?
A: The accepted way to describe a person who suffers from narcolepsy is a “person with narcolepsy”. This is often abbreviated to PWN both in writing and speaking. To say someone is narcoleptic or cataplectic is not acceptable and can give offense as it defines a person by their condition rather than by defining them as a person with many attributes, including a particular condition, in this case narcolepsy. In articles on this website we will often use the term PWN
Q: IS THERE MORE THAN ONE TYPE OF NARCOLEPSY?
A: There are two major types of narcolepsy currently recognised:
Narcolepsy Type 1 is narcolepsy with cataplexy,
Narcolepsy Type 2 is narcolepsy without cataplexy.
On this site when we refer to narcolepsy we are referring to Narcolepsy Type 1. If we refer to Narcolepsy Type 2, we will specifically refer to it as “Narcolepsy Type 2”
Q: HOW MANY PEOPLE SUFFER FROM NARCOLEPSY?
A: The estimated figure for Ireland and the UK is that 1 in 2000 people suffer from Narcolepsy.
This compares to a figure of .
1 in 450 people who suffer from Type 1 Diabetes
1 in 600 for Multiple Sclerosis.
1 in 500 for Parkinson's disease.
It is estimated that only 25% of PWNs have been properly diagnosed and are being treated.
Q: WHAT HAS GONE WRONG?
A: There is a small part of the brain that is called the hypothalamus. It has many important functions. One of those functions is to produce a chemical which is called hypocretin (also known as orexin). Both names refer to the same chemical. We will refer to it from here on as hypocretin. There is an area within the hypothalamus that produces hypocretin and secretes it into the brain’s fluid. In narcolepsy the cells that form the part of the hypothalamus that produces the hypocretin have been totally or partially destroyed. The result is that there is little or no hypocretin produced and the brain is forced to function without it.
Q: WHY ARE THE HYPOCRETIN PRODUCING CELLS DESTROYED?
A: This remains to be fully established. However, scientists now feel that there is a strong likelihood that narcolepsy is an autoimmune disorder. What does that mean? Well, when a foreign entity such as a flu virus or a bacterium (known as antigens) invades the body, the body’s defence mechanism goes into action and produces antibodies to destroy the invader (antigen). Without the successful defence of the body on a continuous basis carried out by antibodies against innumerable invaders (antigens) the body would not survive, We would die. So antibodies are vital to our survival. Antibodies are large molecules which attach themselves to the invading body and effectively destroy the invader (antigens), thus protecting the body. But occasionally the antibodies make a mistake. In an autoimmune disease the body’s defence mechanism mistakes part of one’s own body as a foreign invader, as if it were a virus or bacteria, and produces antibodies to destroy that part of the body. In the case of narcolepsy the immune system mistakes the cells in the hypothalamus which produce hypocretin as foreign invaders (antigens) and attacks and destroys them.
Apart from narcolepsy there are some 80 known autoimmune diseases. Diabetes Type 1, Multiple Sclerosis and Rheumatoid arthritis are all autoimmune diseases.
Q: WHAT IS THE SIGNIFICANCE OF HLA - (Human Leukocyte Antigen)?
A: HLA antigens are molecules produced by the HLA genes. They are located on the surface of the white blood cells and their job is to coordinate the immune response. 90 % of people who develop narcolepsy share a specific genetic trait. This genetic trait is variation of the gene HLA-DQ. The variation is know as HLA-DQB1*0602. This genetic variation is carried by about 25% of the population
Q: DOES THE PRESENCE OF THIS GENETIC TRAIT MEAN THAT YOU WILL GET NARCOLEPSY?
A: No It does not. If it meant that, then 25% of the population would have narcolepsy.
But it is a statistical fact that more than 90% of people who have narcolepsy do have this genetic variation - DQB1*0602. This genetic marker can be easily tested for in the blood.
It is estimated that 1 in 500 people who have this genetic variation will develop narcolepsy.
Q: WHAT TRIGGERS THIS AUTOIMMUNE ATTACK?
A: That it not yet understood, but it seems to often be associated with a recent infection, such as the flu. Narcolepsy is found to develop most commonly in late spring. This seasonal pattern has led to the theory that the immune system may be triggered by a winter infection.It is theorised that the antibody response to such an infection attacks and destroys the hypocretin producing cells too. This theory is becoming more firmly established but it is suspected that a combination of other factors may be at work too in a process which is not yet fully understood. Here is a link to a lecture given by Dr. E Mignot in Feb 2019 where he explains in great scientific detail the tremendous progress which has been made in recent years towards understanding the cause of narcolepsy and progress towards developing hypocretin / orexin agonists (substitutes). Dr Mignot is one of the leading world experts on Narcolepsy.
https://www.youtube.com/watch?v=T9uvVNwLVZc&list=PL_PD0Wbw_olL62m5QTuFgASxYa-T_1f5x&index=10
Q: HOW IS THE PANDEMRIX VACCINE LINKED TO NARCOLEPSY?
A: Another identified trigger is the H1N1 Swine Flu vaccine, Pandemrix, which was administered in response to the global Swine Flu outbreak. This vaccine was administered in Ireland and some other countries from 2009. A significant spike in the number of new cases of children and adults developing narcolepsy was recorded in the weeks and months after receiving the Pandemrix vaccination. By 2010 investigations were launched in European countries into a link between the vaccination and narcolepsy because of this spike. SOUND is a special support group for persons in Ireland who developed narcolepsy who had received the pandemrix vaccine. The link to the SOUND website is: https://soundireland.ie/
Q: WHAT DOES HYPOCRETIN NORMALLY DO?
A: Although all aspects of this are not fully understood, scientists are certain that hypocretin plays a vital role in controlling how we sleep and when we sleep. This is called the sleep cycle. Hypocretin controls the sleep cycle.
Q: WHAT HAPPENS WHEN THE HYPOCRETIN IS MISSING?
A: When hypocretin is missing the sleep cycle is severely disrupted and this leads to various symptoms.
Q: IS NARCOLEPSY HEREDITARY?
A: The short answer is not significantly. However, statistics do show that if you have narcolepsy that the risk of your child developing narcolepsy is about 1%. This is a very small risk, although clearly a higher risk than the incidence of developing narcolepsy in the general population, which is 0.05%.
Q: HOW IS NARCOLEPSY DIAGNOSED?
A: Misdiagnosis of narcolepsy is horrifyingly common. The Narcolepsy Network refers to a recent study revealing that up to staggering 60% of cases were misdiagnosed. The most common common misdiagnosis was depression, followed by insomnia and obstructive sleep apnea. Please follow this link for how narcolepsy is diagnosed.