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Rahel kebede posted a discussion

Steriod use at a later age?

Hello,My son just turned 14 yrs old and was diagnosed with DMD at age 3. At the time of his diagnosis both his doctor and us agreed not to give him steroid because of his another diagnosis which is Autism. After all this years his current doctor suggested to put him on steroid even at this age. He said it may or may not help but may be good thing to consider. my son uses power chair since age 9. Anybody out there started steroid late and would like to share your experience please?Thank you,RahelSee More
10 hours ago
Ursula Meyer is now a member of PPMD Community
rajendra garad commented on Amrit's group Exon skipping 53
"My son has 48-52 deletion He is 4 years 7 months old Last year we came to know he is having Dmd He is on deflazcort .cqlc and multivitamins We are from India. We did stem cell therapy to him. He is better than last year. Hope any up coming…"
rajendra garad joined Amrit's group

Exon skipping 53

Hi,My son has deletion 48-52 and need 53 skipped. Want to get in touch with any one who needs 53 skipped.Thanks,AmritSee More
K s sai punith is now a member of PPMD Community
Jun 14

PPMD added a discussion to the group 2018 PPMD Annual Conference

Getting Around Scottsdale

Use this thread to share wheelchair accessible transportation options in Scottsdale.  PPMD's Connect Arizona Coordinator Jill Castle has shared the following list of helpful resources (click here to download a PDF…See More
Jun 13
Stewart Morgan is now a member of PPMD Community
Jun 8
Naira favorited Naira's profile
Jun 7
Naira favorited Naira's profile
Jun 7
Profile IconJesana marie, Christine and Garima Singh joined PPMD Community
Jun 7
Profile IconNaira and Christopher L Spanburg joined PPMD Community
Jun 4
Aleksandar replied to Sampreet's discussion Utrophin
"I think phase 3 is mandatory, but depending on the outcome of Phase 2 they could have a chance of getting accelerated approval during confirmatory study. "
May 31
Annette Johnson is now a member of PPMD Community
May 29
David posted a discussion

Lung function equipment and training

My son will miss the only trial that I can find that just may give him more time because his fvc score is below their magic number. While the tragic irony of this fills me with rage, I'm again left with an impossible task : improve his FVC from 29% to 35% in six months.Has anyone tried this? Recommendations for equipment or technique? Any and all ideas will be appreciated.See More
May 27
Alma posted a discussion

Exon 52 deleted

What medication do you use. Exondys 51?
May 26
Alma is now a member of PPMD Community
May 25


Steriod use at a later age?

Started by Rahel kebede in Research 10 hours ago. 0 Replies


Started by Sampreet in Research. Last reply by Aleksandar May 31. 1 Reply

Exon 52 deleted

Started by Alma in Research May 26. 0 Replies

Pedal wheelchair

Started by Galia Ben Ishay in Physical Therapy May 10. 0 Replies


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