To date, 440 Swedes have had narcolepsy classified as a drug injury after being vaccinated with Pandemrix against swine flu.
Their brain cells that control wakefulness and sleep have more or less been destroyed, causing them to suffer from constant fatigue, sudden sleep attacks and disturbed night sleep.
- You sleep away most of your life and walk around like a zombie completely depleted of energy, explains 21-year-old Meissa Chebbi from Örebro.
Hard to get a job
Several say that they have had difficulty finishing their studies and finding a job.
- It is an incredible stress to experience that you are not able to work hard enough to take care of yourself and survive, says 25-year-old Kajsa Asp from Gothenburg.
Some of those with narcolepsy sufferers remain at home with their parents despite being in their 20s.
They simply can not afford to move away from home.
But the worst is the loneliness, many think.
- It is heartbreaking to lose the entire circle of friends.
You try to be with friends but in the end the fatigue takes over and the friends have a hard time understanding it, says 26-year-old Fredrik Eriksson from Värmdö.
Lack of support
Virtually all narcolepsy victims that SVT has spoken to express great sadness and disappointment at the, in their opinion, lack of help from society.
They are calling for more specialists, more help from counselors and an increased understanding from the school world.
- There is so little knowledge about our disease among the authorities and agencies that decide on our future.
We victims constantly need to fight for help and support, says 25-year-old Jennie Abrahamsson from Västerås.
No cure
There is no cure for narcolepsy.
They try to alleviate the problems with the help of sleep breaks and heavy medication.
Drugs that are often classified as drugs and that have severe side effects.
- I feel pressured by the authorities to take medication and do not get any other help even if I ask for it, says Kajsa Asp.