CP and Narcolepsy — Scope | Disability forum
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CP and Narcolepsy

lesleyg
lesleyg Member Posts: 4 Listener
edited April 2021 in Cerebral palsy
Hi
My 18 year old has just been diagnosed with narcolepsy and has had CP from birth. There seems to be almost no precedence for this, narcolepsy being extremely rare and even rarer  combined with CP. We no longer have a CP consultant and the sleep disorder consultant only sees his bit. I think we need some help on recognising  what impact they have on each other and managing it. 
Richard, any advice on where I go from here?


Comments

  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Thanks for your post. I have absolutely no experience with narcolepsy and you are right when you say that the combination of both is extremely rare. From what I have read the two conditions are not linked. I would work with the sleep disorder consultant in the first instance to manage the narcolepsy, as you are more than used to managing the CP together. How does CP affect your son?

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @lesleyg, I'm afraid I'm no expert either, but I'm wondering whether Narcolepsy UK may be able to help. They have some good resources online and a telephone helpline you can contact, who may at least be able to point you in the right direction:

    If you have a specific narcolepsy related issue on which you need advice, please call our helpline:

    0345 450 0394

    Our resources are limited, and the helpline is not currently available 24/7. If you are not able to get through to one of our operators, please use the contact form below and we will get back to you by phone or email as soon as we can. Please understand that our staff work part-time and are in great demand, and it may therefore take us a few days to respond to your enquiry. Email is often the best way for us to communicate with you initially, so if you have an email address please do enter it in the form.

  • lesleyg
    lesleyg Member Posts: 4 Listener
    Thanks both, I am already working closely with narcolepsy uk.
    They are great. 
    Looks like I am doing the right thing then.

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