Reader Interactions


  1. Kara Guppy

    It is great that it featured on Channel Five's Medical Mysteries and raised some awareness. Perhaps as Michael was so young he managed to recover more quickly?

  2. BavarianSojourn

    My cousin had Guillane Barr Syndrome when he was very tiny. I remember how awful it was so I cannot imagine what you must be going through with this. Sending you lots of positive strength. x

    • Anne Stone Sweet

      Yes, Guillain Barre syndrome is awful and if not caught early enough can have devastating effects. It's also really rare, but not as rare as TM which is why it's tested for first.

  3. New Mum Online

    Oh I hope you recover too. He was lucky it seems. I love the academic way you have reviewed the programme. Even though they are rare conditions it is good as you say, as the medical community clearly need educating.
    My best friend's son in Ireland got a rare condition and the Dr did not know what to do. The nurse DID but sadly he felt undermined and said "you do your job and I'll do mine" which delayed him going to a bigger hospital, delayed his recovery and meant his kidneys shut down in the meantime which could have been avoided. He still has emotional trauma surrounding it as a result so I agree with you Dr.s need to be clued up on things even if rare xx

    • Anne Stone Sweet

      I'm sorry to hear about your friend's son. I'm always fighting in the corner of medical zebra's. Doctors do a brilliant job but they are very doubtful when something presents itself that they are not familiar with. My daughter had a non traumatic neck injury that was ignored because she hadn't fallen, it wasn't until I lied saying that she had fallen that they even scanned her and discovered the problem! Yet, the symptom was common for her rare condition.

    • Anne Stone Sweet

      I do agree, although I'm still at the stage of hoping I will have a happy ever after ending I do realise that it probably won't be like that. I do feel that the program was over-sensationalised too. It doesn't help that the boy and his mum seem to have a liking for appearing on tv programs as well.

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