Viewing 4 posts - 1 through 4 (of 4 total)
  • #188459
    A little hello

    Hello everyone my name is Andi-marie as you probaly already guessed 😂I’m 35 and my daughter has just turned 10 and has been diagnosed as a manifesting carrier of beckers muscular dystrophy, she has had learning and behavioural difficulties for a long time but over the past few years she has been diagnosed ADD and ODD so the pead that we saw suggested a gene test so back in January off we went for her first ever blood sample she was so brave bless her any way a few weeks later we got the phone call to say they had found something but unfortunately for me her dad took the phone call so when he passed on the info to me it was half a story not his fault he didn’t really understand either any way that was at the start of lockdown so as you can imagine it was hard to get in contact with anyone so I sat and worried for weeks then in may came the letter from Newcastle hospital for an appointment on the 30th of June anyway I’ve waited so long and worried so much untill that appointment it was a video appointment so maybe not the best but it has put my mind at ease so much. I also joined a group on Facebook to have a nosey on and ask questions. So hello everybody how are you all doing?? :new:

    Andi-marie
    Participant
    Posts: 0
    Joined: 01/07/2020
    #188461
    Reply To: A little hello

    Hi Andi, I have BMD and both my daughters (17 and 15) are carriers. I am divorced and so don’t get much of a chance to ask them about this sort of thing, especially since the Covid 19 pandemic; in fact I haven’t seen them since early March! The point is, they havent had any problems relating to BMD.

    I am still ambulant but pretty unsteady on my feet, walking with the aid of a walking stick of late (was brought home in an ambulance at Christmas time after bashing my head on the pavement). I never learn though, as I fell in the park last weekend whilst walking the dog. I couldn’t get up, and was shuffling about on my hands and knees for ages, until I was helped up by passers-by (many people wouldn’t help me unfortunately).

    Anyway, I hope you are both getting somewhere with the hospital etc, it isn’t exactly a lot of fun, this md business.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #188487
    Reply To: A little hello

    Hello Andi-Marie and welcome to the forum. You are going through teh same process as all of us with MD and children go through, but on top of that there is the virus problem to consider too. I am glad that Newcastle have managed to put your mind at ease. They have an excellent reputation and I am sure you will be speaking with them many times. In the interim please feel free to use the forum for chat, questions, information, even ranting. We all need to do that .

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #188565
    Reply To: A little hello

    Hi Andi Marie

    Welcome to forum. Have you joined ‘living with md’ on facebook?

    Feel free to ask any questions or share thoughts.

    Hoping you and your family all coping well during lockdown etc. Services are a bit different just now. some good some bad. Ive found the online clinics with my regular clinics much handier. (no travel)

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
Viewing 4 posts - 1 through 4 (of 4 total)

You must be logged in to reply to this topic.

Keep in touch