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Narcolepsy & Healthcare Providers

What could healthcare providers do to help treat narcolepsy better?

  1. I remember when I went to see my first doctor I was told I was hallucinating, instead of being understanding and giving guidance as to what a patient may have, it was dismissive and blunt. He did not say what he thought I may have only that I needed to be tested. I believe doctors, providers, and specialists need to be forth coming with patients and potential patients about what their assumptions of what may be going on and assure them that they will help to figure out what they may have. To be honest with understanding when a patient feels lost and needs guidance to help them is what anyone needs when a disorder feels abnormal, but looks invisible to others.

    1. Instead of assuming you are depressed, actually listen to a person when they say they are tired all the time and sleep often. Most doctors know nothing about Narcolepsy but, they don't want to know. Fortunately, when I told my doctor about falling when I laugh and feeling paralyzed, she sent me to a neurologist. I can't even count the number of doctors that said I was just depressed without checking anything but wanting to give me medication that effects a person't brain.

      1. I think more doctors need to educate themselves on narcolepsy- and all sleep disorders for that matter. I've explained things to GP's before about my narcolepsy and they acted as if they had no idea what I was talking about. How can we diagnose people faster if the doctors they visit know nothing about this disorder?
        Xoxo/Zzz, Gabrielle

        1. Exhaust every resource they can. When patients are bringing up a need that might sound tricky to deal with, Listen and possibly ask others for help. Others being healthcare professionals. I also think that encouraging patients to advocate and be apart of larger discussions would be beneficial. ( Tre, Team Member )

          1. I totally agree with encouraging patients to advocate. As someone who was misdiagnosed a few times, it took me (figuratively) slapping my doctor in the face and saying "I AM TOO TIRED TO FUNCTION!!!" before she finally recommended a sleep study. I am grateful that I was still relatively young when I was finally diagnosed, but I wonder how different my life would have been had I been diagnosed sooner.
            Xoxo/Zzz, Gabrielle

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