Starting a scientific career with narcolepsy

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My life as a young scientist living with narcolepsy

Most of us have fallen asleep during a film, while reading or during an online meeting. But imagine a constant struggle to stay awake in the laboratory, no matter how much sleep you have had.

I also experience cataplexy — a condition in which emotions, especially laughing, can cause my muscles to become paralysed while I remain fully conscious. This might result in full-body paralysis and collapse that can last for several minutes.

I halved my working hours with the support of my principal investigator, who also agreed to flexible hours for desk work and even organized a mattress for naps in the office. I’ve had very little success with medications for my condition, but since 2020 I have had an assistance dog, called Yaska, who makes my life easier and, especially, safer. Her training means she can warn me before sleep attacks happen, she keeps me awake during meetings or presentations by interacting with me, and she wakes me up at the right train stations. Her presence significantly reduces cataplexy attacks in public because I completely focus on her, which keeps my emotions under control.

 

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...Good Idea..

'I’ve had very little success with medications for my condition' I think the article is missing info about why things like Modafinil failed and how they were used / useful / useless.

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