s***o
发帖数: 714 | 1 国内6岁侄儿检查出来44号基因缺失，DMD (Duchenne Muscular Dystrophy) 杜兴氏肌
肉营养不良症。
请问版上有没有做这方面研究或者是了解这个病的，能不能给点建议？不胜感激！谢谢
！！ |
l*h
发帖数: 4124 | 2 very unfortunate. but not much can be done besides supportive care.
another unfortunate kid in the following thread, same disease.
http://www.mitbbs.com/article_t/Medicine/31257085.html
【在 s***o 的大作中提到】
: 国内6岁侄儿检查出来44号基因缺失，DMD (Duchenne Muscular Dystrophy) 杜兴氏肌
: 肉营养不良症。
: 请问版上有没有做这方面研究或者是了解这个病的，能不能给点建议？不胜感激！谢谢
: ！！
|
s***o
发帖数: 714 | 3 非常感谢lmh的回复！我google了但还是不是很清楚。这种病应该尽量少运动，还是适
量运动，比如游泳，来减缓病情？
还有wiki上这段话http://en.wikipedia.org/wiki/Duchenne_muscular_dystrophy#Splinting_.28orthoses.29
好像是说睡觉时戴类似护膝的东西，会有好处？
再次谢谢你！
【在 l*h 的大作中提到】
: very unfortunate. but not much can be done besides supportive care.
: another unfortunate kid in the following thread, same disease.
: http://www.mitbbs.com/article_t/Medicine/31257085.html
|
l*h
发帖数: 4124 | 4 current recommendation is to maintain moderate physical activity. don't do
intense exercise. intense exercise may cause more muscle fibers to die
early. "应该尽量少运动" is not good either. it causes loss of muscle
functions due to disuse.
I don't know about "好像是说睡觉时戴类似护膝的东西，会有好处？"
【在 s***o 的大作中提到】
: 非常感谢lmh的回复！我google了但还是不是很清楚。这种病应该尽量少运动，还是适
: 量运动，比如游泳，来减缓病情？
: 还有wiki上这段话http://en.wikipedia.org/wiki/Duchenne_muscular_dystrophy#Splinting_.28orthoses.29
: 好像是说睡觉时戴类似护膝的东西，会有好处？
: 再次谢谢你！
|
t*******n
发帖数: 4445 | 5 Supportive care is important for most illnesses, and for life in general.
For DMD there are advancements in recent years.
Once I came across a profile article on Pat Furlong, founder of http://www.parentprojectmd.org What she did was impressive (much more than ribbons, bake sales and demanding a cure).
【在 l*h 的大作中提到】
: very unfortunate. but not much can be done besides supportive care.
: another unfortunate kid in the following thread, same disease.
: http://www.mitbbs.com/article_t/Medicine/31257085.html
|
l*h
发帖数: 4124 | 6 distrophin was identified quite some time ago. gene therapy has been under
study for some time too. one of the gene therapy studies was successful in a
variety of animals including monkeys, but the vector was not able to infect
the human cells.
【在 t*******n 的大作中提到】
: Supportive care is important for most illnesses, and for life in general.
: For DMD there are advancements in recent years.
: Once I came across a profile article on Pat Furlong, founder of http://www.parentprojectmd.org What she did was impressive (much more than ribbons, bake sales and demanding a cure).
|
w*********n
发帖数: 20873 | |
s***o
发帖数: 714 | |
