My son 6 months not long got diagnosed with DMD it really hard for us all we getting the help from hospital and alsorts of appointment but not knowing much and don’t know anyone that has the same condition just scares me as me and my eldest son 17 months have to be tested aswell
Hi Tracey and welcome to forum. I don’t have DMD but have a couple of friends with the condition and will try to help and signpost in any way I can.
There are dedicated groups for DMD called Action Duchene and Pathfinders. Pathfinders is a group set up be men with DMD. If you post your approx area I will have a look to see if any parent groups or forums in your area.
Hi Tracy, sorry to hear that your son has recently been diagnosed with Duchenne. My son is 11 and was diagnosed at 6 months old.
Are you on Facebook? I admin a Facebook support group specifically for parents of those with DMD in the UK & Ireland. If you’d like to join just search for Duchenne Parents Zone x
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