General Discussion (319)

Discussions Replies Latest Activity

Deflazcort retailers

Is anybody using someone other than Masters Marketing in the UK to get their Deflazacort prescription filled?   Thinking about trying someo…

Started by Keith Van Houten

6 Mar 15, 2016
Reply by NancyC


Hi friends Is there anybody participating in BMS trials.. Please share your experiences and views as I am planning to participate in the sa…

Started by Shelly

1 Mar 1, 2016
Reply by Rahul Deshpande

For anyone interested in prayer.

My name is Andrea, and my husband, Shawn, and I have two sons, one with Duchenne. We are followers of Jesus - Christians - and though we qu…

Started by Shawn

15 Jan 12, 2016
Reply by Shawn

Petition in support of Drisapersen and thus other drugs to fight DMD https://www.cha

Started by Andrea Cleary

4 Jan 7, 2016
Reply by Andrea Cleary

Variety of emotions

My son was recently diagnosed with DMD.   Had a conversation with a genetic counselor.  Wanted to get more specific info regarding his test…

Started by Jay Griffin

1 Dec 18, 2015
Reply by Andrea Cleary

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 Campbell

16 Dec 17, 2015
Reply by Kara

Scheduled doctors' appointments.

Hello!!! After we left the neurologist's office with the DMD diagnosis we got referrals for cardiologist and pulmonologist. I already sched…

Started by Hope

6 Dec 3, 2015
Reply by Hope

Advice on getting a Service Dogs

Hello Friends, Our son Krishna is almost 8 yrs now and mobile for the most part. This year at PPMD we saw lots of families with service dog…

Started by Alpa Khushalani

3 Oct 5, 2015
Reply by Alpa Khushalani

Waiting on Results!

Hello. My name is Ginger and I have a 4 year old son Jaxx (will be 5 in January) and a son Liam who just turned 2. We are currently waiting…

Started by Ginger Edwards

4 Oct 2, 2015
Reply by Ginger Edwards

Pain in DMD? How to know his limits?

My son is 10 and was diagnosed with DMD at 5 yrs old. He is still ambulatory and in fact quite active. He can't run as fast or for as long…

Started by Ann Rose

2 Sep 17, 2015
Reply by Megan McGee


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