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?"
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).
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).