We always talk about how little access we have, without a prepaid medical or a social work at the neurological studies that accelerate diagnosis and improve the quality of life of people with narcolepsy or idiopathic hypersomnia, excluding other sleep disorders. And nobody listens to us ... But if we think differently and see who should have these studies for the safety of their lives and our lives? The non-narcoleptic, can you "wake up" to the end and listen? Know what a cataplexy? Paralysis?
Those who are active in professions such as airline pilot, bus driver, train or other means of locomotion, must have a polysomnogram and Multiple Sleep Latency Test, for their sake and that of their passengers (those who drive their vehicles they will according to their thinking) and this should be an unalterable law)
These controls are not law, employers checked HIV for fear of having to be "in charge" of the costs of medications used or if they have higher absenteeism than others. They forget that this is not a danger to the life of the next / neighbor, but someone not diagnosed with Narcolepsy (Gelineau Syndrome) ..... Can you carry a gun and go out to streets or fly an aircraft?
Once diagnosed, a narcoleptic can do almost all kinds of activities, jobs, professions. I told in another post about physicians, surgeons, actors, athletes who suffer and perform multiple tasks. Although there is silence about discrimination, this time called attention to another point and the absolute lack of controls, like an investment that companies or the state does not suit you, then we will never know if the driver had a cataplexy that from carrying to a successful journey and passengers died .....
We know that there are diseases that by their "visibility" affect and move us all, we consider cruel, unjust, painful and they affect children add the component of the difficulty of development in their life and it "breaks the heart" of those who see them. There are registered cases of narcolepsy in children, a mother can attest to this blog with your own history.
Narcoleptic THE PERSON IS NOT A SLEEPING MUCH, THIS IS A DISEASE THAT PREVENTS THE DREAM AND CONTINUOUS MULTIPLE Awakenings (BUT NOT THE PATIENT RECORD) ADDED TO OTHER FACTORS THAT MAKE THE DREAM COME IN BRAIN TRY SEVERAL TIMES IN THE DAY
If we put pictures of some pathological deformity or talk about terminal cancer, many people will mobilize support for these patients. The risk of death stirred the waters, the feared death ... but narcoleptics do not die in sight, they do not has been researched, and collateral issues to it. There is a big group of autoimmune diseases and symptoms varied asociadoss to Narcolepsy (Gelineau syndrome) hypo-hyperthyroidism, hirperlaxitud, multiple sclerosis, fibromyalgia, changes in body temperature .... and actually the autoimmune never come singly, patients have expressed another and the body is vulnerable given the limited number of hours of recovery ...
Get informed global citizens and require these laws, do not wait for this disease is known too late ...
July 22nd 2011 at 19:33
I would love some authority we ever talk seriously and not those promises of a certificate to have a job and lugo, sielencio total denial of the disease to the part of some authority who has it ..............
September 15th 2011 at 22:05
Hello my name is Sofia, I do not suffer Gelineau syndrome but the subject interests me greatly, I love watching movies, movie fan and honestly I did not know this disease until I saw .... My Own Private Idaho was 12 years old at the time, now I have 20 almost 21.
I want to express you hear the flu vaccine can trigger this disease, talk to my doctor, indeed with my pediatrician, psychologist and other physicians to whom I have to go because I was operated on the heart and I have to make checks every year.
The thing is that they ask and I comment about it, I said it was invented, that of narcolepsy syndrome ... or does not exist, when I told him the symptoms, I said it's an excuse for lazy people who do not want to cosas.Realmente not answer wrong, but I was annoying that I have with such arrogance when in fact if it exists.
I very interested in the topic, as I said so I will continue seeing what happens.
Greetings from Argentina, Buenos Aires, city of Quilmes.
September 15th 2011 at 22:21
Dear Sophie, I'm sorry you give those answers. There Fleni Institute, Favaloro Foundation, the Hospital and other sleep disorders center at the Hospital Italiano in pediatrics is very seriously. Stanford University and his research, another site is http://www.planetnarcolepsy.com and to complete the info is a comprehensive list of neurologists in almost all hospitals in Spain, France, United Kingdom who have discovered the genetic cause of the disease. Imagine, you seem to develop many serious studies, labs included, if this is silly? It seems that these doctors I spoke neurology should not have approved ..... jokes apart, as is documented since last century!! Not even heard of orexin and its deficit? Unworthy a bit but ... not so much because in this case the problem is they who have graduated from medical .......! Thank you for your comments and greetings
September 15th 2011 at 23:32
Thank you very much for the information
, We have to make this grow, because there is no nonsense. Very good your contribution to this blog.
regards
28th September 2011 at 20:56
I have 41 years and I suffer from narcolepsy 18. I did FLENI studies, Dr. Encabo, makes about 20 años.Me said that my level of narcolepsy is very high, because I could not study and I can not work, I find it impossible ... I live in San Salvador de Jujuy, Jujuy, Argentina. And suffer many years I want to communicate discriminacion.Hace coa narcoleptic, because I think we should unite. I do not take any kind of drugs because I've decided. learned to control the breath to keep from falling or "aflojarme".
I did very well find this page, I appreciate immensely, what I wanted.
Stay in contactto.Saluditos! Alicia Meyer
3rd October 2011 at 22:48
I have some questions that probably are pretty stupid so to speak lol but hey I'm doing a project about this and I want to make it as real as possible and that I'd better answer the people who have this syndrome. Although taking drugs, do I still have to do if or naps in the day? ¿Ponele 3 times a day? and do you have the will continue taking cataplexias but less frequently if you take drugs?
from already thank you very much for this space
regards
23rd November 2011 at 12:48
Hi Alice, we can keep in touch. We live in a large country and that makes it difficult to meet existing cases diagnosed. Hopefully more than those who decide to write. A big hello!
13th December 2011 at 20:33
Hello! Sleeping Beauty thanks for your article and has Alicia for your comment, I decided to inquire about having my mom sleep, sleep practically all day, at night usually does not have any kind of anomaly in the dream, but during the day every time you get somewhere, or when someone coversa of nowhere to sleep! in my family do not doubt that you have a disorder and is effectively what has Narcolepsy, live in Cusco - Peru, and here there is no truth espeialista, if neurologists but no one said I had this disease, they merely say that is it (age 60) or as normal and take vitamins. The question is how could I treat it? or good as it is called the specialist treated???
Thank you very much for the answer!
Anais, Cusco - Peru
25th December 2011 at 23:46
Hi Anais, you should make an appointment with a neurologist who preferably be devoted to sleep disorders. A person 60 years is very young, we think of how many years left to live and do it the best way and not how old you are! Sometimes doctors can give those answers "light" but still the average life of 80 years, is not healthy to do so with the best? 20 years in good condition is not little! Ideally ask polysomnography and multiple sleep latency test as an ECG will not leave anything relevant though some begin the practice. Vitamins! So I gave the girl I had not thought it was narcolepsy! Good luck and remember: sleep specialist. A love and good luck already to tell us about health systems in Peru
16th January 2012 at 22:03
Hello Bella, Greetings, I hope you contact me in Mexico, I have 31 years
16th January 2012 at 22:07
GREETINGS FROM MEXICO TO ALICE MEYER, NORMA narcoleptic 31 YEARS AND DOES NOT TAKE DRUGS BUT HE NEVER been paralyzed or anything like that, BUT I fall asleep.
16th January 2012 at 22:10
JOBS FOR YOU PUT MY CONTACT ESTARVEN gimnasia@live.com STANDARD FOR ALICE MEYER