Djamel fathi's Comments

Comment Wall (50 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 9:45am on December 10, 2008, Dina said…
Hi! We are from Absecon-just outside of Atlantic City.
At 5:32am on December 8, 2008, Nabeel Ahmed said…
Salam again, I want to know one more thing from you,please ask with your Doctor, If we try for anohter baby, in case of baby boy he will get same deseas or not, in case of yes, is there any precaution to save next baby from this deseas.
At 1:32am on December 8, 2008, Nabeel Ahmed said…
Thanks for your co-opration, Eid ul Azha Mubarik, May ALLAH help us for our Sons, again thank you very much for your co opration.
At 4:00am on December 6, 2008, Nabeel Ahmed said…
My son can walk, but feel difficulty, when he walk he take out his stomuck and need help.he attand school with wheel chair,
I am sorry to say I need for him motorized wheel chair in our country it is not awailable, please help me to find out second hand and cheaper one in USA. if you can.
At 3:46am on December 5, 2008, Nabeel Ahmed said…
Salam, My son got becker MD, he is now 15,and can not walk,
At 2:32am on December 4, 2008, Nabeel Ahmed said…
Salam and Thanks for your comments and kind information, I pray for your son and all who are suffering, You know in Pakistan goverment level there is no facilities and nothing for this type of patient,have you read aboud PTC124 and what you thin about it.
At 2:40am on December 3, 2008, Nabeel Ahmed said…
Hi Djame I need latest information about DMD and BMD,
At 8:42am on December 2, 2008, Lori Ware said…
THe main Doc that you hear about in Canada is Dr. Doug Biggar. I am not sure where he is, but he is a huge advocate for Deflazacort and a very kind, smart and knowledgeable man. He and Dr. Wong collaborate frequently I believe. We see Dr. Wong in Cincinnatti. If you only have a deletion of exon 45, I believe you only have to skip exon 44, which will come sooner than skipping multiple exons. They are doing trials right now in the UK and possbily Austrilia to skip exon 51, but skipping 44 is one that has been discussed as an up and coming exon. Keep in mind though that exon skipping only takes your son to a Beckers, granted, much better than DMD, but not a halt to the disease. I am really looking forward to utrophin upregulation as a viable treatment. Hope this helps.
Lori
At 3:32pm on December 1, 2008, Joni Redlich said…
Hi Zahia. There is great stretching information on the PPMD website if you wanted to get started with a stretching program before your son sees the doctor. I enjoyed your photos- the kids are adorable!
Joni
At 7:14am on November 30, 2008, Jenny Garofalo said…
Hi Fathi,
I will definetly be there. I will call tomorrow to see if you recieved all the stuff from Ryan or else I will print it up for you. Important to have copies for eveyone. I will plan to arrive at 1:30pm. What is the name of the school again?
Jenny

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

Members

Events

© 2021   Created by PPMD.   Powered by

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