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Hi, my name is frenchclaret!

I’m looking for people to talk to about the effects of ADEM. My son is three years post ADEM and is 6.5. Hopefully someone in Lincolnshire. But not essential. 


  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @frenchclaret, and a warm welcome to the community!

    Hopefully we can help. Would you like to tell us a bit more about ADEM? I don't think I'm familiar with it myself!
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Welcome to the community @frenchclaret
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,912 Disability Gamechanger
    Hi @frenchclaret welcome to the community! :)
    Disability Gamechanger - 2019
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @frenchclaret

    Good Afternoon & Welcome 🙏🙏

    I do hope that you have had a good day????

    I have managed to find one of our members who has got a son 3yrs old with ADEM.

    Hi @SunshineLou

    Can you please help me with this new member who has mentioned about her 3yr old son who has got ADEM.

    Many Thanks.


  • SunshineLouSunshineLou Member Posts: 93 Pioneering
    Hello @steve51 yes of course I can.

    @frenchclaret how can I help?

    I was struck down with ADEM in 2014. I’m an adult sufferer but can help with any questions you may have about what your son may be experiencing if you’d like me to.

    You can send me a private message or ask me on here.

    I can also recommend some other online communities that may well help you.

    Lou x
  • SunshineLouSunshineLou Member Posts: 93 Pioneering
    ADEM is a very rare NeuroImmune disease. It’s very similar to MS. It’s so rare it doesn’t have a classification of its own so it’s grouped with other Myelitis conditions such as MS, TM, NMO etc etc...

    Its inflammation of the brain and spinal cord with Myelin damage. I had extensive lesions throughout my central nervous system.
    For children the incidence is about 4 in a million. For adult sufferes such as myself it’s around 1 in 4 million (or so I’ve been told).

    I get most of my support from The Transverse Myselitis Association and Society. Plus I’m a member of HeadWay and the Encephalitis Society.

    I only know of two other people who were struck down as adults. One in the US and one in Germany. There’s not many of us out there.

    My own attack was very severe. I spent 3 weeks in a coma and was completely paralysed on waking. I spent 4 months in intensive rehabilitation and still have permanent disabilities. ABI & SCIs aren’t fun!

    Hope that sheds some more light?

    Lou x
  • SunshineLouSunshineLou Member Posts: 93 Pioneering
    I forgot to add, the full name is:

    Acute Disseminated Encephalomyelitis 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Thanks for sharing @SunshineLou, and great to see you've connected with @frenchclaret!
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