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.
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.
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.