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Shady
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Shady's Discussions

Abs workouts for duchenne

Started Jul 21 0 Replies

Anyone knows are abs exercises useful or not recommended for children with duchenne? and If useful ,how many repetitions and time weekly?

Duplication of Exon 53 to 57 out of frame

Started this discussion. Last reply by Sanja Kogelnik Jul 16. 1 Reply

Hello everybody, anyone has a patient son with duplication of Exon 53 to 57 ,also I would like to know would some out of frame mutations lead to Becker or mild progression for example (out of frame…Continue

Tamoxifen for children with duchenne

Started May 30 0 Replies

Dear parents my 7 year old son was recently diagnosed with dmd and we are waiting a genetic test ,he can walk till now and he started tamoxifen 2 weeks ago as I heard about tamoxifen promising…Continue

 

Shady's Page

Latest Activity

Shady replied to Can Hope's discussion Deletion exons 5-16
"Same as my son , anyway Thanks God that they are still young and hope for a cure soon ,I think gene therapies for example microdystrophin may be the cure soon we have to focus now on a good care for them"
Aug 9
Shady replied to Can Hope's discussion Deletion exons 5-16
"Dear how is your son symptoms now? and when did you discover the onset age of symptoms?"
Aug 9
Shady replied to Can Hope's discussion Deletion exons 5-16
"My son has a duplication of exons 53 to 57 predicted to be duchenne as it leads to out of frame reading,when I asked my neourlogist she said that all mutations are complicated and the estimated phenotype is only based in researchers data, The…"
Aug 9
Shady replied to Can Hope's discussion Deletion exons 5-16
"Good day I guess that your son's mutation leads to in frame reading which is highly predicted to be milder form ( Becker) as the said deletion may not disrupt the DNA reading frame, exon 4 can match Exon 17,you can ask a genetic…"
Aug 9
Shady posted a discussion

Abs workouts for duchenne

Anyone knows are abs exercises useful or not recommended for children with duchenne? and If useful ,how many repetitions and time weekly?
Jul 21
Sanja Kogelnik replied to Shady's discussion Duplication of Exon 53 to 57 out of frame
"Unfortunately, mutation out of frame leads to DMD :("
Jul 16
Shady posted a discussion

Duplication of Exon 53 to 57 out of frame

Hello everybody, anyone has a patient son with duplication of Exon 53 to 57 ,also I would like to know would some out of frame mutations lead to Becker or mild progression for example (out of frame mutations on specific site or specific exons of the dystrophy gene?Thanks in advanceSee More
Jul 6
Shady replied to Galia Ben Ishay's discussion Tamoxifen
"Wishing your son and all of our sons a good health forever"
Jun 17
Shady favorited Galia Ben Ishay's discussion Tamoxifen
Jun 9
Shady replied to Galia Ben Ishay's discussion Tamoxifen
"Hi Galia any updates / improvement about tamoxifen with your child now?"
Jun 9
Shady posted a discussion

Tamoxifen for children with duchenne

Dear parents my 7 year old son was recently diagnosed with dmd and we are waiting a genetic test ,he can walk till now and he started tamoxifen 2 weeks ago as I heard about tamoxifen promising clinical trials ,if anyone was on tamoxifen can share his observations? Or anyone can suggest another drug showed better results, thanks and wishing a good health and cure for all our dear sons
May 30
Shady is now a member of PPMD Community
May 25

Profile Information

About me:
Father of a 7 years old with dystrophy
Name(s) of child(ren)/individual(s) with Duchenne:
Ziad
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Cairo

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