PANDAS Syndrome

cackie
cackie Online Community Member Posts: 2 Listener
edited October 2021 in Rare, invisible, & undiagnosed conditions
At the age of 36 i was diagnosed with Paediatric Autoimmune Neuropsychology Disorder Associated with Streptacoci.
Is there anyone in the same boat?
I was told it was very rare in adults. That was 13 years ago.

Comments

  • SunshineLou
    SunshineLou Online Community Member Posts: 79 Empowering
    Hi @cackie. 
    I read about PANDAS years ago when I was researching about my sons diagnosis of Autism.
    Since then I’ve heard nothing about it.
    Can I recommend you contact HeadWay maybe?
    They’re a brain injury charity (I’m a member with my own ABI). 
    I’m sure they’d be able to point you in the right direction of info and support. 
    They may have members who have the same condition and often arrange for people to chat or meet to support each other.
    Just an idea.
    Hope you find people in the same boat!
    I know what it’s like to have a rare condition!
    Mine is ADEM, and as an adult sufferer I’m about 1 in 4 million!

    Lou x
  • topkat1
    topkat1 Online Community Member Posts: 10 Contributor
    @cackie, Hi, I have recently been reading up on PANDAS as it was mentioned in my online community for KLS. I have Kleine Levin Syndrome and there are a lot of similarities with both. Sunshinelou has given you good directions for support... Good luck x
  • cackie
    cackie Online Community Member Posts: 2 Listener
    Thank you im going to google KLS. Ive only just found this discussion site. It is great to realise you are not alone. X

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