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  • #180482
    LGMD 2I (FKRP)

    Hi! After 10 years on here, often asking others for advice and not for one minute expecting a diagnosis more than ‘likely lgmd’, I’ve received news today (thanks genome project)….
    I have LGMD 2I or FKRP. I am 35 and have been struggling since early 20s. I walk still but am a bit unsteady. I’m rubbish on stairs. Anyone else with this?

    Posts: 0
    Joined: 04/03/2019
    Reply To: LGMD 2I (FKRP)

    Hi Pips

    I can totally understand how it feels to get this information. After having a general diagnosis aged 6, I got my genetic proof in my late 30s of the subtype. I don’t know why but it matters. It has been great and very useful to get to know others with UCMD over the years.

    I’m sure we have members on here with your particular MD so keep checking back. Take good care.

    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
    Posts: 2,246
    Joined: 05/03/2015
    Reply To: LGMD 2I (FKRP)

    I have LGMD as does my brother, and also to a milder extent than my brother and I a sister also has it.

    I was diagnosed with LGMD at around 18 years ago (I am now 56), I noticed things weren’t right since my late twenties.
    I have not received a total full diagnosis, even through the Genome Project sadly. I’ve just about stopped walking almost entirely now, too wobbly, too dangerous. Getting slowly used to being in a wheelchair and looking forward to having a powered chair soon as I am rubbish at self propelling! Will be moving into a bungalow in about 10-12 months.
    My main advice is keep walking and clambering upstairs for as long as you possibly can safely. You’ll know when the time comes to move onto a wheelchair or whatever, the fitter you stay the longer you will walk OK for.

    I wish you all the best ‘Pips’.


    "Stairs? Yes we have stairs, but there's only three" :-/

    Posts: 0
    Joined: 21/02/2017
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