Hi everyone.Amit is my younger brother who is turning 18 this October. Last December he was informed by doctor to start Deflazacort. But considering its side effects, we have decided not to start taking it. Now recently we have come across Stem Cell treatment for DMD. But we are so ignorant in this field that we don't know the abcs of it. So pls help us decide whether or not we should opt for this stem cell therapy.Thanks.......

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I am pretty sure the "researchers" of are seeing "improvements" in other patients and stem cells "may" become a "treatment". After all this the folks will ask you to sign a document saying that this is a experiment with no claims.

 

If you want I can share phone numbers of other parents who have been lured into this scam. Dont make decision ins a hurry and desperation

 

That said if any one claims to have any level of success ask them so share documented proof. There are lots of real experts here who can help you evaluate the information.

I see that you have chosen not to use deflazacort.  Have you tried it?  I ask because some guys experience more side effects than others.  It could benefit respiratory and upper arm function.

 

Stem cells are promising for many genetic diseases, but they are not a treatment/cure at this time.

 

Best wishes to you and your family.

Past blog by Pat Furlong on the topic....

 

http://community.parentprojectmd.org/profiles/blog/show?id=1187424%...

 

You're concerned about the side effects of steroids.  The side effects of these stem cell treatments are... ?

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