Why Advocate for Narcolepsy?

by julie on March 8, 2014

Happy Suddenly Sleepy Saturday! I created this infographic to explain why it’s so important we raise up our voices about narcolepsy:

why advocate for narcolepsy julie flygare narcolepsy patient spokesperson project sleep infographic project sleep national sleep awareness week

  • 75% of people with narcolepsy are undiagnosed and untreated
  • Only 50% of adults believe narcolepsy can significantly impact overall health, despite serious nature of the disorder
  • Only 70% of adults have heard of narcolepsy – the lowest public awareness among a range of diseases including diabetes, Alzheimer’s, Parkinson’s, multiple sclerosis and cystic fibrosis.
  • Only 7% of those who have heard of narcolepsy consider themselves “very knowledgeable” about it.
  • 9% of primary care physicians and 42% of sleep specialists are comfortable diagnosing narcolepsy
  • 22% of Sleep Specialists can name all five major symptoms of narcolepsy

Data from The AWAKEN Survey: a national online survey commissioned by Jazz Pharmaceuticals and conducted by Harris Interactive in 2012. Infographic by Julie Flygare 2013. 

Please share to build a brighter future!

{ 1 comment… read it below or add one }

Josh Josh March 30, 2014 at 10:05 pm

Greetings,
M y name is Josh(REAL NAME JONAH)Born and brought up in an African soil.A journey of identity and discovery is what led me to your ever resourceful site.I am 26yrs old and i work in a sales industry.Last year i developed weird symptoms at place of work .Every time we had a meeting i would dose off(EDS).This was the genesis of my fate as my peers started to ridicule and brand me as the sleepy guy.I consulted my doc who advised me to take a break/leave from my very demanding job attributing my fatique to nature of my job.
The unfolding symptoms developed into hallucinations and sleep paralysis of which i was referred to a psychiatrist who gave me dozens of drugs that caused more harm than good to my health.Due to stigma from peers i resigned from my only source of livelihood.Being from third word economy where proper medical attention is a reserve of the rich,I opted to “accept” this strange disease and move on.September 2013 i accidentally came across narcolepsy and its symptoms in the internet.It perfectly described me.I went to see a sleep doctor who carried out an EGG taste and confirmed that i am indeed a narcoleptic.
That marked the beginning of self discovery.My father(uneducated) attributed the symptoms to a curse, stress or depression while my peers strongly believe that i am a drug/alcohol addict and i don’t sleep at night that is why i dose anyhowly during the day.Twice this condition has failed me in a job interview as i went asleep in the middle of the session.
I accidentally hit into your educative site an eye opener and a new paradigm shift in the discovery of my self.No one tends to understand me in my community.My relationship is drowning as no lady wants to buy into my story that i am suffering from sleep sickness.
I AM SUFFERING IN SILENCE.MY CAREER AND RELATIONSHIP IS SINKING.
PLEASE HELP!
Josh,
Nairobi,Kenya-Africa.

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