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Bethlem Myopathy – newly diagnosed

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  • March 10, 2015 at 7:34 pm #75529
    Bethlem Myopathy – newly diagnosed

    Hi, have just been diagnosed with Bethlem Myopathy – has only taken 21 years! Through various different diagnosis of Limb Girdle MD, FSH MD, myofibrillar Myopathy myself and 4 other members of my family were lucky enough to have a full DNA check and have got a definite diagnosis. Would be great to chat with other people with Bethlem to compare experiences – especially people around my age (37). I am fortunate enough to still be mobile and able to work full time. I generally get along ok, but struggle with large steps and uneven surfaces. I generally find that my biggest obstacle is other people’s attitudes! Just because I can walk around ok they seem to think that I am perfectly alright and certain people even think that we are faking it! Some people seem to think that you only have a disability if you are in a wheelchair! Sorry to rabbit on, but am so relieved to find somewhere to share experiences! I look forward to chatting. Helen :waving:

    HelenB78
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    Joined: 10/03/2015
    March 10, 2015 at 7:44 pm #96339
    Re: Bethlem Myopathy – newly diagnosed

    Hello, welcome.

    A lot of people have this problem of others attitude, its the invisible disability problem, if you can’t see it then it doesn’t exist! The general public and average joe can be very guilty of this but then as a wheelchair user i find them just as intolerant at times.

    Vicki
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    Joined: 05/03/2015
    March 10, 2015 at 9:57 pm #96340
    Re: Bethlem Myopathy – newly diagnosed

    Welcome to the forum.

    The things you say are familiar to many on this site. Feel free to
    ask questions or just have a chat. We do have members with Bethlem but
    they might not see your message immediately.

    Thanks.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
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    Joined: 27/09/2010
    March 12, 2015 at 11:56 am #96341
    Re: Bethlem Myopathy – newly diagnosed

    Rabbit away :waving:

    I remember my teen years when walking while a little awkward was possible and the disapproving stares I would get from a generation of a certain silver haired age when I parked in the disabled parking space. you develop a little attitude yourself and mine slipped out one day when a person suffering from age and excess cattily grumbled at me “These are for disabled you know” to which my much miffed reply was “So sorry not to be cured by puberty” and carried on unloading my light shopping bags and hanging onto the trolley for all it was worth. :lol:

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
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    March 31, 2015 at 8:34 pm #96342
    Re: Bethlem Myopathy – newly diagnosed

    These messages make me feel so much better! Sometimes I blame back pain as the reason for problems (eg not carrying things at work etc). Its just easier as people seem to accept that more readily…. When my back has been at its worst its a relief in some ways!

    Cat11111
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    Joined: 01/09/2014
    March 29, 2016 at 12:39 am #126163
    Reply To: Bethlem Myopathy – newly diagnosed

    Hi Helen, I have Bethlem Myopathy too and have been searching for someone with the same condition to talk to so hopefully you will see this message ? I find it hard having BM because it is a hidden disability and you kind of feel like a fraud when u use disable facilities but like I always tell myself “I wouldn’t use them if I didn’t need to,” I’m 24 years old and the looks I get when I park in a disabled bay or use a disable toilet is horrible so I know exactly how you feel! It would be lovely to hear from you and talk more, Becky

    Rebecca

    Becky
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    April 28, 2016 at 4:00 pm #128212
    Reply To: Bethlem Myopathy – newly diagnosed

    Hi Helen and Becky, I have Bethlem Myopathy too and would really like to talk to others with the same condition. I’m 35 and I got a confirmed diagnosis in 2014. I’m lucky enough that my mobility is still pretty good – I struggle with inclines and stairs and have definitely noticed this getting worse over the last year or so, along with increasing fatigue (which has become my main problem – I’m exhausted all the time!). I can definitely relate to what others have said about it being a hidden disability and the assumption that if you can walk around ok you must be fine. I’ve also used the bad knee/bad back excuse when people I don’t know have “helpfully” commented that the stairs seem a bit of a struggle etc. Sometimes I don’t feel like having the conversation about why it’s difficult and it’s easier just to laugh it off and blame something that doesn’t require any further explanation!

    PolkaDot1
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    Joined: 28/04/2016
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