I came across your blog. If i may ask how old are your sons? I have 2 sons with DMD, aged 2 and 3, they are very different and i am sure that they will be affected differently, are your sons very diffrent ?

Hi Brian, I do not doubt the fact that bone development and growth are related to DMD. There are several studies one looking at more than 100 boys showing that they are shorter than their siblings. However, they are not as short as the boys on steroids. We all know that stunted growth and osteoporosis are side effects of the steroids, no one doubts that. The point I wanted to make is that having a boy as short as the boys today, after years and years of steroids, can easily make them obese. On contrary, if my son is 5'6" due to DMD and not 4'6" due to "DMD+steroids" (I am 5'8" and my husband is 6'5") he can easily have a normal weight for height. Obesity causes many other problems not even mentioning the cardiovascular ones. Steroids are the gold standard of care because we do NOT have anything else to compete with them. Every doctor I talked to agrees with the fact that they have serious side effects and that we need to find a replacement therapy minimizing these side effects if possible. I am sorry that I cannot accept the status quo and blame Duchenne for every single thing that makes my son different. Some things are related and some things are not. I am not going to ignore the serious side effects and just say that it's Duchenne. The fact that we do not have a better alternative does not mean that we should just say, it's fine, he would have been shorter anyway due to DMD. He would have been shorter but NOT as short, not overweight, insuline resistant, puberty delayed or having bone density of a 80 yo woman at age 10. I also do not accept the fact that we are told that height does not matter, as they lose ambulation anyway. I guess I still hope that the future will be different and at some point during the next few years we will not be told that it doesn't matter and we will have better alternatives. And don't even get me started about the fact that many parents tell us from the start that our boys will have cognitive problems. I lost the first years of my son't life searching for these problems, thinking that he should have some. My son doesn't have ANY of them. Neither do many of my friends sons. I think that it is time to look at each of our boys individually and not try to put them in the same bucket only because they have Duchenne. The fact that they have a certain mutation in the same gene doesn't mean that they will be similar in all aspects. I think that it is time to tell parents of young boys that they can excel academically, have friends, develop just like any other non DMD boy. My son and many of my friends sons are real proof of that. Ofelia 

Hello, my name is Jefferson and DMD have, as I do to be able to talk to you? Excuse my way of speaking but I need to talk to someone who can help me. I am new to this networking site and do not know how to use it perfectly.

Brian, All studies I looked at suggest "shorter" stature (some suggest 6 cm shorter than non DMD siblings, others -1 SD etc.) but not to the level where the boys fall off the charts. Almost all DMD boys today fall off charts after a certain age. The studies also note that GH deficiency is not Duchenne related, neither is delayed puberty or insulin resistance. I am sorry to say that I still do not believe most of the things mentioned are due to Duchenne itself (the data does not show that) and we certainly do know that they are steroid side effects. I think scientists should focus on approving a replacement to steroid treatment (Eric Hoffman's company is "working" on one for a while now) so our boys can have average height and normal weight. There is a big difference when you have 140lbs on a 4'6" frame vs. a 5'6" frame. Obese vs. normal weight for height.

Hi Brian,

I hope you and your family are well. I lost yours and a bunch of other email addresses when converting from one system to another, so I wanted to leave a quick note to see if we can catch up briefly before the Connect Conference. The interview study has come a long way since the last conference, and if you have a few minutes I can send you some notes on ideas I'd like to emphasize in the talk I'm giving this year. You can email me at william.reynolds@stockton.edu.

Look forward to catching up. Thanks.

Bill