Somethong to think about.
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Only 25% of Americans with narcolepsy have a diagnosis and treatment. That’s a bit shocking if 1 in 2000 people suffer from it. I suppose there could be several reasons why?
Well no it is only saying that 25% of those diagnosed have the diagnosis AND treatment. Narcolepsy is very hard to treat in the US. A lot of the medications are ridiculously expensive and to get insurance to pay for them can be a nightmare. Even if you have a true diagnosis. So the diagnosis its self isn't the problem, it is getting proper treatment and support following your diagnosis that is. Which I can attest to the fact that there is very little to know follow up from your medical care team once you are diagnosed with something like this. There really needs to be. They need to point you in the direction of support groups or something, but most of the time they do not.
I would be amazed in the UK if any doctor suggested a support group. They seem to hate the very idea of support groups or patients doing any kind of Internet research. I hope trainee doctors are more enlightened and will come to realise the positive benefit such groups have for the patient.