Undiagnosed and rare conditions
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topkat1topkat1 Member Posts: 8 Courageous
Hi all at scope. I see I missed the discussion on rare diseases :-( but would like to say that I have been diagnosed with KLEINE LEVIN SYNDROME ( KLS ) . It s a neurological sleep disorder, which has been referred to previously in the media as 'sleeping beauty syndrome' but believe me....that is a far cry from the reality of it! Are there any others with KLS on here? We have a fab community online which are so supportive and informative. I also have athritis in jaw, hands and spine, scoliosis and sclerosis of spine, dropped foot with numbness from knee down on left leg...and a few other little medical ailments. I must admit too that I have not been engaging with scope as I should and will try to be more involved in the future.....


  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    edited February 2019
    Thanks for.explaining your syndrome @Topcat1 . With so many ailments now do you manage to keep positive each day and what helps you in low moments? 
    A laugh a day keeps the psychiatrist at bay. 
  • Adam_ScopeAdam_Scope Member Posts: 164 Pioneering

    Hi @topkat

    Thank you for sharing with us and for being part of our community.

    Let us know if we can help you with anything/

  • topkat1topkat1 Member Posts: 8 Courageous
    @LaughingLolly It can be quite difficult to keep positive but I try and laugh a lot, keeps your spirits up doesn't it :-). I have some really good friends who keep me going when I feel low and I try and remember that there are those a lot worse off than myself. Doesn't always work but you have to keep trying, never give up. I also have a really supportive KLS online community where I can offload to those that understand what I am going through. I also come here and read community posts...and knowing I am not alone is a definite positive. x
  • topkat1topkat1 Member Posts: 8 Courageous
    @Adam_Scope Thank you and I will x
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @topkat1, and a warm welcome to the community!

    It's great to have you here and particularly great to learn a bit more about Kleine Levin Syndrome. I hadn't heard of it before so it really is good to hear more about it. Please do get involved with the community, and if we can be of any assistance, just let us know!
  • topkat1topkat1 Member Posts: 8 Courageous
    I am so ashamed that it's been so long since I came on here last. I'm not the best at keeping in touch tbh but this is a bit ridiculous even for me  :lol: Anyway, hope you are all doing ok, especially with Covid-19 amidst us! I am fine, bit bored as we all are I'm guessing, but no major health issues to speak about thank goodness...just the usual. Keep safe all xx
  • janer1967janer1967 Community champion Posts: 7,481 Disability Gamechanger
    Welcome back and no need to apologise for not being active for a while as long as you know we are here when you need us  and hopefully we can stop some of the pending boredom for everyone over the next challenging month
  • Tori_ScopeTori_Scope Community Team Posts: 3,319 Disability Gamechanger
    Welcome back @topkat1 :) As Jane said, there's no need to apologise! You're always welcome here. 

    I'm glad to hear that you're well. I think a lot of people are feeling bored at the moment, have you tried taking up any new hobbies or learning something new? 
    Online Community Coordinator, she/her

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