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Latest Activity: Jan 12, 2017

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Comment by Donna Skibo on November 22, 2014 at 6:52pm

Thought I would update my son's status since my 2012 comment. He got a heart transplant at Tampa General Hospital on June 4, 2014. He did the 3.2 mile heart walk last Sunday. Thanks to lots of good doctors he is doing well at 50.

Comment by Amelia on November 20, 2014 at 11:28pm

My son was diagnosed with Bmd today, just looking to friend others, looks like this group is active but just thought I would try,

Comment by Shay Briones on October 7, 2013 at 10:40pm
My son is 8 and he has walked on his tip toes since he could walk. His calfs are very big and tough. We had the genetic blood tests for duchenne and Becker it came back inconclusive. We moved over to limb girdle blood work and nope that wasn't it either. So they now want us to do a muscle biopsy...
Comment by Gregory N. Vrakatitsis on September 17, 2013 at 4:48pm

Hi, I am a 61 year old man with BMD. Did not get diagnosed until about 5 years ago, when I developed a foot drop. I do moderate exercise (stationary bike) about 6 days/week. I am not receiving  any treatment, just being monitored. I use a cane to get around, but I am still walking, driving, working. I went to Children's in Columbus, and participated in a study as prelude to clinical trials, but was eliminated from consideration for trials because my genetic study did not fit narrow profile of trial. Hopefully something else will come along, where I can participate. 

Comment by Donna Skibo on August 7, 2012 at 9:10am

Donna:

My son has Beckers & is 48. Beckers varies in severity widely. It also varies in the age of onset. Some have been known to be diagnosed at 65. It can be mild or pretty severe. Many times as in my sons case the heart is affected even while a person is still able to walk.  He has a CRT-D (pacemaker with defibulator) Some Beckers patients have improved with increased exercise. I think this is because of the fact they have some dystrophin. You have a daughter with Duchenne? That is really rare. For the boy with Beckers get a really good cardiologist he/she can save his life. Do you know his deletions or whatever?

Comment by Donna Cicardo on August 7, 2012 at 8:26am

Hi, how is everyone.  I was wondering what the boys ages are in this group, any tips on what you treatment is, are you still walking...any info would be great.  my son is 11 1/2 and is progressing fast. 

 

Comment by lisa burke on August 1, 2011 at 5:14pm
Seth isn't getting any treatment at the moment. I just hope he will do some day.
Comment by Jeff Trecha on July 8, 2011 at 10:18am

HI Donna:

My 2 son's (13 and 10)  have BMD (Stop Codon - Exon 1, point mutaiton). They are still getting dystrophin (but shorter version). They only complain in very cold weather or if they are out playing for 2+ hours.  They say their legs hurt (femur) area and limp some times. But stop and rest for abut a 1/2 hour. 

If bad - we will message the area.

We give them moltrin "if" we know they are going out to do lots of excercise (before ball practice). But otherwise, we do not hear (or see) any other complaints.

Hope this helps - take care

Jeff

 

Comment by Donna Skibo on July 8, 2011 at 9:50am

Joined this group to see if there are other BMD patients out there with experience in limited exercise.

Lisa B:

Don't understand. What treatment is Seth getting?

 

Comment by lisa burke on May 15, 2009 at 4:12pm
I'm joining this group because I kind of hope that this is what Seth will have after he's had some treatment......
 

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