Good morning. My name is Masa, and I have narcolepsy.
With ORZEYFUL expected to become available soon, I cannot help thinking about one question:
What would I like to do if my narcolepsy improved?
Since I was about nineteen, I have lived with the feeling that, in a sense, I had already given up on half of my life. But now, as I approach forty, I feel as though a new chapter of my life is about to begin.
The following ranking reflects only my personal wishes, but I believe that other people with narcolepsy may relate to at least some of them.
No. 5: Enjoy lectures and concerts
As a teacher, there have been many lectures and professional-development sessions that I wanted to attend. However, I was always held back by the fear that I might fall asleep and offend the speaker. In fact, I often did fall asleep and was left struggling with self-loathing afterward.
There were also many concerts and theatrical performances that I wanted to see, but I stayed away because I assumed that I would fall asleep anyway.
If my narcolepsy improves, I want to enjoy these experiences wholeheartedly, without constantly worrying about falling asleep.
No. 4: Drive a car or ride a motorcycle
I obtained my driver’s license when I was eighteen. At the time, I had not yet been diagnosed with narcolepsy, although I was already experiencing symptoms. At driving school, I would repeatedly fall asleep while watching instructional videos or taking written tests, but I somehow managed to get my license.
Naturally, however, because I was prone to falling asleep, I hardly ever drove.
Fifteen years later, my desire to travel freely led me to obtain a motorcycle license. I made the excuse to myself that riding a motorcycle might be possible because my body would be completely exposed and the constant sense of danger would keep me alert.
In the end, however, the fear that I might fall asleep prevented me from riding at all.
If this new medication improves my symptoms, it would be wonderful to buy a car or motorcycle and take my family on trips to distant places.
No. 3: Reassure my family
Since I was eighteen, my family has worried about me because of my condition. My mother, in particular, has had to endure a great deal of anxiety.
I imagine that the families of many people with narcolepsy suffer almost as much as the patients themselves.
With the help of this new medication, I want to live a full and rewarding life—and finally give my family some peace of mind.
No. 2: Approach my work with confidence
At work, I have always felt ashamed and inadequate because of my condition. I would fall asleep at nearly every meeting and then be overwhelmed by self-loathing afterward.
Even when I had something to say, I would tell myself, “No one would listen to the opinion of someone who keeps falling asleep. I do not even have the right to speak.”
As a result, it felt almost impossible to assert myself or express my ideas to others.
If I could remain fully awake, I would like to express my views without fear and work freely, confidently, and with my head held high.
No. 1: Sleep soundly without fear
Recently, my nightmares and lack of restful sleep seem to have improved somewhat. Until four or five years ago, however, going to bed was always frightening.
The nightmares and hallucinations I experienced just as I was falling asleep felt so real that even the simple act of sleeping terrified me.
If ORZEYFUL acts directly on the orexin system and restores its function, I hope that it will improve not only wakefulness but also the quality of sleep itself.
More than anything, I want to be able to go to bed without fear—and enjoy a peaceful, restful night’s sleep.
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