Living with NarcolepsyThis section is a place to share stories about Living with Narcolepsy. Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation. You may also Help others by sharing your story. To quickly access health information from your website's browser, download narcolepsy 
I am a 59 year old female and have been suffering with narcolepsy since I was seventeen. This is a disorder that is devastating. I have all the symptoms of narcolepsy, which I can tell you number more like twenty, when you include symptoms of sleep deprivation because of the night time fragmented sleep. Those of us with narcolepsy could write a book on how this has affected our lives and I can tell you it has a big impact, from school, to jobs, to social and personal relationships. Some call this the invisible disorder or that it doesn’t really exist. My purpose here is to tell you that we need to educate public, health care, especially school and human resource personnel of this devastating disorder to help lessen or prevent many of the problems that narcolepsy causes. The statistics show that only 1 in 4 people with narcolepsy are EVER diagnosed. This is so unacceptable. The average time for diagnosis is 20-30 years. I was diagnosed after 33 years. Most people do not associate sleep with a disease or disorder and do not speak to their physicians, nor do their physicians ask about how they sleep. Physicians only spend about seven minutes in medical school learning about sleep disorders. Sleep and nutrition are the most intregal parts of our well being. This disorder is as frequent as multiple sclerosis and some children now are being misdiagnosed with ADD Please if you are reading this take the time to educate yourself and your friends about this devastating disorder. Thank you so much.
September 2008
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