Members: 73
Latest Activity: Jun 24, 2020

Comment Wall


You need to be a member of Duplications to add comments!

Comment by dietf on March 7, 2016 at 2:43am
A re-comment after two years. My sons are 8.5 and 6. Now our elder boy has problems with his legs. He has gower's sign. We have duplication on exon 39 and still don't have muscle biopsy. Does anyone have knowledge about utrophin drug smt c1100. Will it be a cure for us?
Comment by Jo-Anne on January 8, 2016 at 7:54am

My son Kevin is turning 19 next month and has a duplication on 62 or 63?

Comment by Marilyn Ash on May 19, 2015 at 10:38am

Hi!  My son is 3 and was just diagnosed with DMD.  He has a duplication of exon 2.  He is still walking and not showing any signs/symptoms.  Thankfully!  My brother had DMD and so I pushed for testing recently.  Our Genetic therapist told me that it's a milder and common form of DMD.  Is that true?  My brother had the same mutation and lived until he was 35 without any support/intervention. I'm still in shock trying to find the strength to keep fighting!  It's so hard to live through it all over again.  A lot of open wounds and fresh ones too :( 

Comment by dietf on November 15, 2014 at 12:39am
I have two son with dublication on exon 39. We didnot have muscle biopsy. We have dna analysis. One is 7 and the other is 4,5. There is no signs yet. We are using steroids for the elder.
Comment by Char Burke on November 14, 2014 at 10:20pm

Just checking in with my duplication friends to see how everyone is doing.  I am struggling with the fact that my son has a duplication and won't be eligible for any exon skipping any time in the near future.  It's great that DMD boys with exon 51 are getting dosed with Serupta drug but I can't help thinking about our guys.  What is everyone following - any one taking any new supplements that are different or interesting?  I read about beet juice and that is produces nitric oxide which is part of the chemical process that muscle use.  I read about it in a magazine about health.  They gave the example of beet juice being used by an athlete and that person ran further and fast and recovered faster than any other of the athletes. 

Love to hear from the duplications - Best, Char Burke

Comment by Sherri Looper on October 20, 2014 at 12:02am

Hi Char. I don't have a son but an 11 year old daughter with duplications 8-17. Mobile, but trips and falls a lot, uses a stroller for long distances, is slower and weaker than her peers.

Comment by Char Burke on October 19, 2014 at 12:38pm

It's been awhile but I wanted to check in and see how our son's with duplications are doing.  Can you all check in - how about age, where our son is at on mobility, what he needs help with, what the mutation is.  BTW - if you know anyone with a duplication that isn't involved in the group - please invite the to join.  We need to join together and be heard.  Thank you!  Char Burke

Comment by Satish on July 18, 2014 at 1:26am
Our son 4 years old has duplication of 51-55. He is walking right now for small distance.
Comment by Cure for Carson on May 4, 2013 at 1:36pm

Our son Carson is 11 years old.  He has a duplication of 8-9.  He is still walking, jumping, tries to be very active.  He is very smart and has a quick witted personality!  I wish medicine could move at a faster pace, I am fearful that we will run out of time with Carson in his current state. I am however grateful for his abilities right now.

Comment by PAULA KERR on February 12, 2013 at 5:47pm


We have three boys with duplication of exons 3 -7. Only diagnosed in November 2012......still struggling to put one foot in front of the other. Never fail to be overwhelmed by the kindness of strangers.......especially some of the best scientists and international experts on DMD. One professor said that duplication of exons 'run a milder course' - can this possible?? God help us all. Thank you. Best wishes, Paula


Members (73)


Need help using this community site? Visit Ning's Help Page.



© 2021   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service