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  • #177927
    Myotonia Congenita

    Hi :new: I am new here and both me and my 18 year old daughter both have Myotonia Congenita. I’m in the process of applying for student funding for her but need to establish if Myotonia Congenita is considered to be a disability under the Equality Act 2010 guidance. It’s 60 pages long and is impossible to make head or tail of to be honest. Our neurologist doesn’t know and suggested I ask here. Any advice? thanks :ty:

    sailinggirl
    Participant
    Posts: 0
    Joined: 20/05/2019
    #178088
    Reply To: Myotonia Congenita

    Hello and welcome sailinggirl. It is indeed a complex and difficult document to plough through, let alone thinking about how those making the decision will interpret its meanings. but therein lies the crux of the problem. It is not the condition that should be classed as making you a disabled person, it is what the conditions does for you. You need to examine in that in very great and objective detail. A disabled person is someone who is not able, roughly speaking. for me, with FHSD, that disability shows as limited walking ability, limited arm movements and pain everywhere. The pain itself can be very disabling but cannot be proved of course (trips to see the pain clinic does support it though. So if talking about my disability I would have to discuss how the lack of mobility makes me less able to do certain things like shopping or getting dressed for example. I hope you re getting the idea. Looking at the disability you perceive, how is that affecting your daily life when it is at its worse. I hope you get the approach needed. Once you have a clear and honest understanding of that then you can begin to compare it to the regulations. But then you also come up against how to use the right words, and what are they, to complete the form. Then you may need to call on the help of someone experienced in these forms for help. I might also suggest that a successful PIP claim would seriously help as evidence here.You must also consider that the education establishment may well have totally different views on disability. For example a number of our local schools will take children from out of area if they are disabled or have other special needs simply because it brings in money. Yet out local primary school makes disabled access almost impossible, teachers using the only disabled parking space for example. It is a tricky and difficult battle to fight, but we are here to help if we can.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #178094
    Reply To: Myotonia Congenita

    Hi sailinggirl

    Welcome to TalkMD. I echo what Mike said above. We have had a few discussions on the forum since it started about your particular condition and i have traveled through and found one thread that might be of interest. Myotonia Congenita

    There have been a few other threads I believe. One way to find them is to google “TalkMD Myotonia Congenita”

    Wishing you all the best with the form!

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
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