Viewing 7 posts - 1 through 7 (of 7 total)
  • #193565
    Anyone with EDMD

    Hey i’m 20 years old (M) with Emery-Dreifuss (found out at 3 years old) would like to see if there is some other people with the condition to see how they deal with things, as I know its a rare type and can effect people differently. is there also ways to contact people with the same condition or talk to people who are going through the same thing?

    Mano
    Participant
    Posts: 0
    Joined: 31/03/2021
    #193572
    Reply To: Anyone with EDMD

    Hello and welcome Mano. I am sure someone will come along and be able to give the specific info you are looking for, in the meantime I wonder if you have made contact with this group?

    https://www.facebook.com/groups/EmeryDreifuss/

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #193591
    Reply To: Anyone with EDMD

    Hello and welcome Mano. I am sure someone will come along and be able to give the specific info you are looking for, in the meantime I wonder if you have made contact with this group?

    https://www.facebook.com/groups/EmeryDreifuss/

    Mike

    Thanks i’ll sure have a look at it.

    Mano
    Participant
    Posts: 0
    Joined: 31/03/2021
    #194131
    Reply To: Anyone with EDMD

    hi Mano, my 2 sons have EDMDin UK , if you want to chat they are on facebook Andy Gray and Tom Gray aged 38 and 36 https://www.facebook.com/profile.php?id=100021842234040

    https://www.facebook.com/profile.php?id=100064973919572

    cherryblossom
    Participant
    Posts: 0
    Joined: 22/04/2021
    #194158
    Reply To: Anyone with EDMD

    I have EDMD and am based in the UK, the last year hasn`t been kind to my condition with shielding!

    I am a 47 year old Male, first post despite being a member for a long time

    :new:

    Topcat
    Participant
    Posts: 0
    Joined: 16/11/2015
    #194235
    Reply To: Anyone with EDMD

    Hi Mano. I’m not affected by EDMD, I have a son with Duchenne, however I admin a Facebook support group for those affected by any type of Muscular Dystrophy and those who support them. If you’d like to join you’d be more than welcome

    https://www.facebook.com/groups/3384836634865707/

    KatR
    Participant
    Posts: 0
    Joined: 04/07/2019
    #194422
    Reply To: Anyone with EDMD

    Hey! thanks for the replys I will sure have a look and get in contact, i’ll also have a look at this group thanks.

    Mano
    Participant
    Posts: 0
    Joined: 31/03/2021
Viewing 7 posts - 1 through 7 (of 7 total)

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