narcoleptic people

Narcolepsy Support Groups: Help is Here for You

Introduction:

Before jumping into a discussion of the various groups assisting Narcolepsy patients, it is important to mention the disease itself briefly. Narcolepsy is a neurological disease, which leads to various physical as well as psychological disorders. The symptoms range from acute sleeping disorder (with patients falling asleep during the day irrespective of the time and place) in spite of a sound sleep at night to acute concoctions and emotional outbursts. Various social feelings such as humor, excitement and even emotional moments with the dearest and nearest one can trigger off cataplectic attacks. As a result of this, the patients face psychological disorders and gradually withdraw themselves from the social life. They are often regarded as blunt, indiscipline and unmotivated. At times, this can be life-threatening as well. Various support groups have emerged all over the world to provide patients of Narcolepsy all the necessary medical assistance. They are helping victims to overcome the disease and lead a normal life once again.

Support Groups:

The Narcolepsy Support Group is a community that is primarily comprised of people with a history of Narcolepsy and family members and friends of Narcolepsy patients dedicated to dealing with Narcolepsy, together. The first and foremost thing that a patient of Narcolepsy needs is empathy instead of sympathy. While unnecessary sympathy may become frustrating, empathizing with a patient will make them mentally stronger and provide the strength needed to fight the disease. Here is where the Narcolepsy Support Groups play a very handy role. The patients or their family members can always come in contact with any of these support groups and share their problems without any hesitation. Apart from that, when contacted, these groups can provide the patient the necessary information about the nature of treatment they will need and the places where they can get themselves treated.

The Way they Work:

Generally, the Narcolepsy Support Groups gather the email addresses, phone number, age, sex, how the disease was diagnosed, for how long he or she has been suffering, what exactly are the symptoms and other information about the patients and maintain a database. They then contact the doctors and psychologists and take their guidance in setting up their operations. With advice from the doctors they arrange interactive sessions of funs, slide shows of various types of colorful photographs, pictures and paintings etc. They have the option of inviting the patients to write on various Narcolepsy-related topics. They also ask them to share various interesting food recipe, games, and indulge in discussing different current events in the websites.

The main idea is to make the patients feel at ease and happy and also helping them to have an open mind to adopt different opinions, points of views and thereby remove the mental blockage that has developed in the back of their minds.

It’s common for people working in shifts (especially in factories, call centers, hospitals) in a 24×7 work profile to be more prone to this disease. For the Narcolepsy patients, medicines are not the only way out. While the medicines, to some extent, decrease the severity of the disease, in maximum number of instances, it’s seen that the medicines tend to have certain side effects which cannot be ignored. Hence, there is ardent need of a very strict dieting habit and some basic physical as well as mental exercises. The Narcolepsy Support Groups provide the guidance in dieting and even run a course on various physical and mental exercises in accordance to the age and sex of the patient and on the severity of the disease.

Apart from all these already mentioned activities, other objectives of the Narcolepsy Support Groups can be jotted down in the following fashion:

Since there are a number of support groups operating virtually all over the world, they serve as a centre of excellence for a particular place, thereby assisting the patients. This is particularly helpful for patients staying in the rural areas who do not have access to world-class medical treatment very quickly.
Like many social organizations taking care of other diseases like AIDS and Leprosy, these groups also contribute extensively in educating the families and healthcare professionals about Narcolepsy
Constantly maintain and develop themselves so as to fulfill the need of the patients at any given point in time
Make Narcolepsy patients aware of their rights and privileges they are entitled to enjoy
Serve the patient in the hour of their need by providing the best possible treatment

There are innumerable support groups working tirelessly all over the world and they are easily available in the net. Hence, it is advisable, whenever someone develops symptoms of Narcolepsy or is diagnosed with the disease, the patient or any of their family members should contact any of these groups and take a friendly advice from them. May be, it will help the patient to overcome this disease quickly. Remember, medication is not the only way out. There are various methods of alternative treatments the patient can be guided through by these support groups. Hence, be frank and free to contact them and disclose your problem without any hesitation before it is all too late.

Conclusion:

With human life getting more and more hectic, every day, people or better to say their body clock and metabolic system is finding it harder and harder to come in terms with them resulting various diseases like Narcolepsy. However, with the tremendous development of medical science over the last few decades or so, new avenues of diagnoses are being explored. For example, the development of genetic map has indeed been a shot in the arm so far as the treatment of neurological diseases is concerned. Who knows, those days are not far away, when the evil of this highly embarrassing and dangerous disease will be eradicated form the face of this world for ever. Whatever happens, the contribution of these support groups can never be ignored and they will be regarded as one of the pioneers in eradicating the disease.

Narcolepsy: Why It Happens

September 11, 2011 By admin 3 Comments

Introduction

The first and foremost question that crops up while going through this topic is what is Narcolepsy? In short, Narcolepsy is a neurological disorder that causes extreme weakness of body muscles resulting in sleepiness throughout the odd hours of the day-even in the midst of a hectic work.
The specialty of this particular decease is that it has nothing to do with any psychological problem and hence, it’s seen that the patient’s social awareness and their ability to respond – as well as their auditory capacity – remain more or less unaffected.

Mild Narcolepsy Symptoms

The primary way to identify a Narcolepsy patient is through the occurrence of Cataplexy, which is a sudden muscle fatigue resulting in strong emotional outburst. Though there are exceptions, it is generally true that up to 70% of Narcolepsy patients also suffer from Cataplexy.

Apart from Cataplexy, the main characteristic of a Narcolepsy patient is falling asleep or feeling drowsy all through the day, even after a sound sleep in the night.
It’s quite common that a patient with Narcolepsy falls asleep in trains and buses, thereby missing the stops. They often fall asleep even while driving their cars, resulting in fatal accidents. There have been instances when a patient has fallen asleep in a dentist’s chamber and have to be shaken awake by the dentist. The more these things occur, the more the patient goes into a social cocoon, withdrawing themselves from the social activities and hence needing immediate medical attention.

This phenomenon is regarded as Excessive Daytime Sleepiness (EDS). Almost 90% of the Narcolepsy patients suffer from this disorder. Other common symptoms are hypnagogic hallucinations. Almost 30% of patients are recorded to suffer from this particular symptom. This particular symptom is attributed to certain dreamy visions those a patient witnesses at the moment of falling asleep. Though one school of thought tends to give certain super-natural angles to this phenomenon, extensive research has shown the exact reason behind this is othing more than a hypnagogic hallucination.

Narcolepsy sufferers also often complain of acute disturbance of sleep during night; some secondary symptoms such as blurred or double vision and dropping eyelids are also very common. Another very common symptom, present in almost 25% of Narcolepsy cases is a condition called Sleep Paralysis. A patient with this particular symptom cannot talk or even move when they are falling asleep or awaking from sleep. This may last anywhere from few seconds to as many as several minutes.
Though in general, Narcolepsy patients have sound sleep at night, there have been certain cases, where a patient has prolonged period of sleeplessness during night, with increased heart rate, occurrence of hot flashes and at certain instances acute alertness for hardly any reason. It’s also often seen that the Narcolepsy patients fall asleep faster than normal, and may get up after hearing an almost inaudible noise.

While a normal person takes about one and a half hour of sleep on an average to see dreams, a Narcolepsy patient can see dreams instantly. As a result of this Rapid Eye Movement (REM) is also a unique feature of a Narcolepsy patient during sleep. At times this REM can be extremely rapid and abnormal.

The most important phenomenon about Narcolepsy is that except for daytime sleepiness, the other symptoms do not affect the patient to a large extent. Hence, those patients who do not have daytime sleepiness may not seek much medical help, thus hindering a conclusive diagnosis.

It can be mentioned that the symptoms of Narcolepsy may remain hidden for many years. In fact, there are cases where Narcolepsy has been diagnosed after as many as ten years of suffering from the symptoms of the condition. Almost 50% of the adult Narcolepsy patients coming for diagnosis have recorded to have been affected by the disease between 15 and 30 years of age.

Conclusion

In spite of extensive research being conducted all over the world, the exact cause of this particular disease is yet to be recognized. One school of thought claims that Narcolepsy is related to a genetic disorder that exists in the history of a family. It’s believed that up to 10% of all Narcolepsy patients had someone else in their families with the condition.

Another school of thought states that Narcolepsy is an autoimmune disease. In these cases, the immune system of the human body produces cytokines more that what is needed for the human body. This affects the immunity system of the body resulting in a series of disorders of various kinds. In this train of thought, researchers believe that the Narcolepsy condition itself may attack those cells which contain brain peptide hypocretin (orexin). This results in certain deficiencies those are the major factors responsible for this disease.

One striking phenomenon that is generally noticed in patients with Narcolepsy is that they contain very low levels of Hypocretin in their body. Though we do not know what exactly causes the damage of the Hypocretin cells, it may be the result of an infection.

Some say that the exact reason of this disease can be a particular type of infection that affects the genetic order. Certain hormonal changes at different stages of life, the environment of the patient, the stress of day-to-day life can also be responsible. A recent study has come out with startling results, though. Almost all the patients of Narcolepsy are recorded to carry HLA-DR15 and HLA-DQ6 gene. Hence, it can be said these gene are more susceptible to Narcolepsy than the others. With research in genetics reaching newer heights and gene mapping already in vogue, we can expect the disease to be eradicated sooner than later.