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dietf
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Corticosteroids may be linked to heart disease

Started Jul 6 0 Replies

Anyone have an idea of this article? It seems that to start using corticosteroid at the age of 5 may be linked to heart diseases. My son began to use corticosteroids at 5 :(…Continue

PRO051

Started this discussion. Last reply by dietf Aug 28, 2012. 3 Replies

Is anybody aware of the change in the "Estimated Completion Date" of prosensa clinical trial?The comletion date was August 2012, but they changed it to July 2013 in 27.07.2012.…Continue

 

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Name(s) of child(ren)/individual(s) with Duchenne:
Sea & Wind
Age(s) of child(ren)/individual(s) with Duchenne:
0-3, 4-6
City:
Istanbul

Hi all,

I have two son and both of them have DMD.

One is 4.5 and the other is 2 years old. We have no issues right now. But we have elevated CK values(40.000)

We had a gene test on my elder son and the result is point mutation on exon 39. Details are c.5586+87dupTC(IVS39nt+87insTC)

We cannot find anyone with the same mutation and hoping to find one.

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At 8:12am on July 18, 2012, Katherine Blake said…

hi- please email me (if you want!!!) at blakek@aafes.com.  My husband is Turkish and we want to meet up with anyone who is living and coping with this disease there!!  Our son has a duplication at 49-56.  We spend a fair amount of time in Turkey and would love to talk with you.  It's very lonely to deal with this, and it's very difficult for my husband since most of our doctors are either here in Germany or in the US. 

Please drop us a line - our boys are so important to all of us!

Katherine Blake (Aman)

At 2:18am on May 28, 2012, mehmet tarık dündar said…

Merhabalar Barış Bey,

Benim de 2.5 yaşında oğlumda DMD çıktı.

Allah yardımcımız olsun..

 
 
 

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