General Discussion (316)

Featured Discussions

Newly Diagnosed

Our son went into the hospital in February with a severe case of pneumonia. Saturday, he was running around like a normal kid, Sunday he st…

Started by Chad CampbellLatest Reply

How did you talk to your son about DMD?

My son Henry, 5 years old, was diagnosed in December. He thought the bloodwork that we had done would help the doctors fix him so he could…

Started by Claire DiemlerLatest Reply

Gonadal Mosaic

Hey there not sure if anyone knows much about Gonadal Mosaic but that's what the geneticist told me I have meaning that some of my eggs hav…

Started by Betty-Anne HeftLatest Reply

Discussions Replies Latest Activity

Birthdays and Duchenne

I'm not sure the best place to post this but here is a blog post I wrote about birthdays and what it means you have kids with Duchenne.  In…

Started by Sarah Kasner

0 Oct 29, 2018

exons 3 - 7

Hi We have just recently got Johns diagnosis as "deletions in exons 3 - 7".  Otherwise we know very little.  John is 10 and still quite mob…

Started by James

26 Sep 13, 2018
Reply by Eileen DeLong

Brenda Wong Leaving CMC

Brenda Wong will be leaving Cincinati Medical Center. i got schoked knowing this news. she is great doctor i came across and felt my son is…

Started by ven

3 Mar 30, 2018
Reply by Robin Taylor

Calorie needs

How can we estimate the calorie needs of a nearly non-ambulant child who is 16 Years old.I have been trying to find information about the o…

Started by Sampreet

1 Mar 17, 2018
Reply by Sarada Kuchibhotla

breathing issues

My son who is aged 20 years has lot of breathing issues. Although he is on a trilogy unit at night time which has helped him sleep better r…

Started by Sarada Kuchibhotla

2 Mar 16, 2018
Reply by Sarada Kuchibhotla

Emflaza (aka deflazacort) Approvals

Just curious - has anyone in the PPMD community received insurance approval for Emflaza (deflazacort) in the US?  We're currently working t…

Started by Keith & Jill VE

12 Feb 14, 2018
Reply by Keith & Jill VE

Equipment & adaptive technology available

Folks:  My husband, Peter, had Duchenne and died earlier this year at age 33. We live in the greater NYC area.  I have given away much of…

Started by JESSICA Resnick-AULT

0 Oct 20, 2017

Is there a more active forum somewhere?

I notice that there seems to be minimal amounts of communication on this forum. Did members transition to another forum somewhere else or i…

Started by Bruce Ward

2 Oct 5, 2017
Reply by Bruce Ward

Creatine Kinase (CK) Ranges for Becker

I have not been able to find a reference to how high CK can go in Becker.  I wonder if some Becker parents could share their son's serum Cr…

Started by Bruce Ward

0 Sep 28, 2017

Mutation in Exon 12

Hi All, I just want to see if anyone else has Nonsense mutation in Exon 12. Just want to keep touch with all the people with this mutation…

Started by ven

0 Sep 11, 2017


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