Viewing 20 posts - 1 through 20 (of 21 total)
  • #74442
    Hello, Bethlem Myopathy

    Hello all, I have just started using TalkMD as I feel very isolated. My daughter who is 8 has Bethlem Myopathy, I am struggling to meet others with the same disability to share information. I am also hoping for advice as no one seems to be able to help. The issue I have just now is we stay in a 3 bedroom house but the bedrooms and the bathrooms are upstairs. My daughter is not allowed to walk up and down the stairs, she now has to crawl up the stairs on her hands and knees and when she is coming down she has to go down on her bottom. She is now sore. I am and have been on the council list for a year and still no joy would be happy for any suggestions xxx gail

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #85725
    Re: Hello, Bethlem Myopathy

    Welcome to the forum.

    Sorry you are having such a difficult time at the moment.

    Bethlem is indeed a rare form of Neuro-muscular disease. We have a couple of people with
    that phenotype but they might not be accessing the forum at the exact time we want. One
    I vaguely recall was later reclassified with some other form.

    We have had some posts recently about housing problems and people railing against the current
    system with so many people with different competing priorities chasing a reducing pool
    of housing.

    There are a network of Regional MD advisors who are experts in all aspects of muscle disease. The
    list is on the main MDC site if you click the logo at the top of the page.

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

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #85726
    Re: Hello, Bethlem Myopathy

    Hi Gail and welcome to TalkMD.

    I have a probable Ulrich CMD which is on the same spectrum as Bethlem but at the more severe end. I am in touch with a lot of people with UCMD/BM and their families through a yahoo group which I can let you have the details or I could ask about UK members – most are US families but there are some UK.

    As Taungfox said, regional advisers are a good place to get practical info and support. Ask away on here as well if you have any questions, between all our members there is a lot of experience right here on the forum.

    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
    #85727
    Re: Hello, Bethlem Myopathy

    hi gail. its only an idea but have you thought abought getting in touch with social services to see about getting a stair lift put in or being moved to an adapted home. :?:

    stefan

    littlestef
    Participant
    Posts: 526
    Joined: 04/10/2011
    #85728
    Re: Hello, Bethlem Myopathy

    Hi all thanks all very much, unfortunately our house can not be adapted and Zoe’s socialworker is as much use as a chocolate teapot :!:

    Thanks all for being nice

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #85729
    Re: Hello, Bethlem Myopathy

    @Zoesmum wrote:

    Zoe’s socialworker is as much use as a chocolate teapot :!:

    :lol: :lol: ask your gp to refer you to an occupational therapist either nhs or council. plague your GP every week to write letters of support . it is really bad for zoes tail bone to be bashed going downstairs.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #85730
    Re: Hello, Bethlem Myopathy

    thanks catatude, we have OT and they are being a great help, I have also decided to ask for a new social worker waiting on a response from the. Also phoned the council and they said it is just waiting on the right house for Zoe’s needs.

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #85731
    Re: Hello, Bethlem Myopathy

    Hi, my 3 year old has a collagen vi myopahy. Probably intermediate between ullrich and Bethlem. I would be really happy to share information if you would like.

    Debra
    Participant
    Posts: 5
    Joined: 27/05/2011
    #85732
    Re: Hello, Bethlem Myopathy

    @Zoesmum wrote:

    thanks catatude, we have OT and they are being a great help, I have also decided to ask for a new social worker waiting on a response from the. Also phoned the council and they said it is just waiting on the right house for Zoe’s needs.

    Hello Zoesmum this is Granny Pat :waving:

    patmccafferty
    Participant
    Posts: 1
    Joined: 17/04/2013
    #85733
    Re: Hello, Bethlem Myopathy

    Hi. I just wondered how you were all getting on. I have a 3 year old with Bethlem myopathy and my partner also has it. (I’m in the uk.)
    Hope you’re getting more help. Xxx

    Snozza82
    Participant
    Posts: 4
    Joined: 23/12/2013
    #85734
    Re: Hello, Bethlem Myopathy

    Hello Snozza82, welcome to the forum :waving:

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

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #85735
    Re: Hello, Bethlem Myopathy

    Hi. Thanks for the welcome. I’m at a real loss at the moment. My three year old is bright and very loveable but he gets tired so quickly and his behaviour becomes manic. He attends pre school but he has a new teacher who can see that he gets through the day playing with the other children and doesn’t encourage him to rest. She says that he does fine and that if I hadn’t have told her that he had a problem she would never have known. On one hand this is great but on the other it’s me that has to deal with it when he’s exhausted at 4pm, too tired to function properly. He throws himself around, gets aggressive and just flops to the floor switching manically between laughing hysterically and bursting into floods of tears.
    Does this sound familiar to anyone? xxx

    Snozza82
    Participant
    Posts: 4
    Joined: 23/12/2013
    #85736
    Re: Hello, Bethlem Myopathy

    Hi there, I was just browsing this forum and thought I would register to share my experience as hopefully it may help people who have children with Bethlem Myopathy.

    I have am 32 years old and have Bethlem Myopathy (although I wasn’t properly diagnosed until I was 20 as it was thought I had SMA). I live independently in my own bungalow and have a full time job as an accountant. I have also been to university. I am still able to walk fairly well, although use an electric wheelchair to get around the village where I live.

    To be honest I had a positive up bringing – I was lucky in that I had (and have) a great group of friends who helped me a lot, although I was definitely stronger and able to walk better when I was younger.

    There were (and are) times when i got a bit down – mainly because I love sport and it is frustrating not to be able to play any sports. The condition can also be annoying in that it is harder to be spontaneous and things such as nights out take planning. It can also be awkward as I have to think ahead e.g. before I sit down in a chair, I have to work out how I am going to get back up again!

    The key problems I have now are stairs/steps and muscle tightness which can be limiting – for example I can’t bend down to pick things off the floor. However, on the positive side, it does force you to think laterally to solve problems – I use my feet to put plugs in sockets as an example.

    One big piece of advice I would give is to stay as active as possible, otherwise I have found my muscles tighten up a lot.

    If anyone has any questions about how I have coped – particularly through childhood, feel free to ask :)

    MartinNotts
    Participant
    Posts: 3
    Joined: 12/01/2014
    #85737
    Re: Hello, Bethlem Myopathy

    Hello Martin – thank you for posting your experiences, its always useful to hear from others affected.

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

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #85738
    Re: Hello, Bethlem Myopathy

    Welcome Martin :waving:

    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
    #85739
    Re: Help! – Bethlem Myopathy

    Hi I was just wondering if anyone one here has got Bethlem Myopathy and has had children and if so did they have the
    dystrophy also? I have the disease and I am 26 Years old they keep telling me its a 50/50 Chance but when I have tried to
    conceive naturally my baby had it and then my brother who also has the disease his baby has got it – And my mum had it and
    her two children (me & my brother) also had it so I was just wondering on everyone else’s experiences as at the moment it doesnt seem like 50/50 to me? x

    emmaLouise
    Participant
    Posts: 1
    Joined: 24/01/2013
    #85740
    Re: Hello, Bethlem Myopathy

    Hi,
    My 3 yr old son has been diagnosed with UCMD and i am looking for other people with similar diagnosis. I am from london, but i now live in canada and was wondering Sar78 if you could connect me to the group on yahoo, maybe i will find people from canada from there. I just want to know that we are doing the best we can for our son? He sees OT and Pt and has made gains, but is tired some days and not so much the other.

    thanks

    thadshp
    Participant
    Posts: 1
    Joined: 20/10/2014
    #85741
    Re: Hello, Bethlem Myopathy

    Hi, yes of course – I will send you the details. I think you can also find the group via http://www.curecmd.org

    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
    #85742
    Re: Hello, Bethlem Myopathy

    Hi, Ive just seen this thread. My partner has MD and initially we were told there was very little chance of passing it on to our children (unless I had the gene too). We later found out it was Bethlem Myopathy but by that point we had our first child and I was pregnant with the second. It turns out that our eldest has got the condition too but our second has not.
    The most difficult part is that our 2 year old (Howie) is now physically stronger than our 4 year old (Noah).
    Luckily Noah has a great set of school friends who run alongside him when the other children dart off. We have never asked them to do that, they choose to.
    I love both boys with every fibre of my being and would love another child but we cannot take the risk. We have to explain the chances when he chooses to have children and I think this will be so difficult. It may mean that because of the chance of passing it on, he chooses not to have children. We have to explain this to Howie too, who is so strong and bright. Despite him not showing any symptoms, it doesn’t mean his children will escape it.
    My partner was also hit by a car 7 years ago which has elevated his symptoms so we have no idea what course is set for noah beyond the age of 26. Life is scary at the moment.
    But then you have the ultimate moment of fun. We go sledging. We see the amazement on their faces at the zoo. We laughed until it hurt at the pantomime.
    Its swings and roundabouts.

    Snozza82
    Participant
    Posts: 4
    Joined: 23/12/2013
    #154865
    Reply To: Hello, Bethlem Myopathy

    Hi, I have Bethlem myopathy. I can share some information about this disease.
    Ask me anything

    Andrey
    Participant
    Posts: 0
    Joined: 27/02/2018
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