"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"
Shady's Discussions
Abs workouts for duchenne
Started Jul 21 0 Replies 0 Favorites
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 0 Favorites
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 0 Favorites
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"Dear how is your son symptoms now? and when did you discover the onset age of symptoms?"
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…"
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…"
Shady posted a discussionAbs 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?
Sanja Kogelnik replied to Shady's discussion Duplication of Exon 53 to 57 out of frame"Unfortunately, mutation out of frame leads to DMD :("
Shady posted a discussionDuplication 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
Shady replied to Galia Ben Ishay's discussion Tamoxifen"Wishing your son and all of our sons a good health forever"
Shady replied to Galia Ben Ishay's discussion Tamoxifen"Hi Galia any updates / improvement about tamoxifen with your child now?"
Shady posted a discussionTamoxifen 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
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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Mitchell's Run thru Rockford
August 19, 2017 all day – Rockford, MI
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RFOS 2017 In Memory of Joshua Arndt 5K
August 19, 2017 all day – Buffalo, NY
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2017 Disneyland Half Marathon, 10K & 5K
September 1, 2017 to September 3, 2017 – Disneyland
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FACES NY - World Duchenne Awareness Night
September 7, 2017 from 6pm to 9pm – Buffalo Yacht Club
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