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April 1, 2021 at 3:23 am #193565Anyone 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?
April 1, 2021 at 12:47 pm #193572Reply To: Anyone with EDMDHello 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.
April 1, 2021 at 9:43 pm #193591Reply To: Anyone with EDMDHello 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.
April 22, 2021 at 12:46 pm #194131Reply To: Anyone with EDMDhi 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
April 24, 2021 at 11:12 pm #194235Reply To: Anyone with EDMDHi 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
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