Aware­ness drive to fo­cus on dis­or­der

China Daily (USA) - - CHINA - WWW.XYWY.COM

Spinal mus­cu­lar at­ro­phy is one of the most com­mon causes of death in ba­bies un­der the age of 2.

It pro­gres­sively destroys lower mo­tor neu­rons — nerve cells in the brain stem and spinal cord that con­trol es­sen­tial vol­un­tary mus­cle ac­tiv­ity such as speak­ing, walk­ing, breath­ing and swal­low­ing.

The first na­tional con­fer­ence on SMA was held in Bei­jing in Au­gust and a re­port on those with the dis­or­der in China was made pub­lic.

Of the 233 suf­fer­ers high­lighted, most were di­ag­nosed be­fore the age of 2, but did not re­ceive the proper med­i­cal tests and treat­ment, such as cor­rec­tive surgery, pul­monary func­tion tests and reg­u­lar med­i­cal con­sul­ta­tions.

Among them, only one pa­tient had sco­l­io­sis cor­rec­tive surgery, less than 7.5 per­cent of them had pul­monary func­tion tests, and 11.2 per­cent had reg­u­lar med­i­cal con­sul­ta­tions.

Ac­cord­ing to the re­port, a lot of work needs to be done to help China’s SMA suf­fer­ers ac­cess med­i­cal treat­ment and re­cov­ery fa­cil­i­ties.

At present, few have the nasal or stom­ach tubes they need to eat com­fort­ably and only a hand­ful can af­ford to use non-in­va­sive ven­ti­la­tors.

The two-day con­fer­ence gath­ered to­gether 10 top SMA ex­perts from around the world.

They held in-depth dis­cus­sions on fun­da­men­tal re­search into the dis­ease, clin­i­cal di­ag­no­sis and treat­ment, pre­na­tal di­ag­no­sis and nurs­ing ex­pe­ri­ences.

In ad­di­tion to the con­fer­ence, the Spinal Mus­cu­lar At­ro­phy Aware­ness Month pub­lic health and aware­ness cam­paign was held in China this year, aim­ing to in­crease knowl­edge of the dis­or­der and as­so­ci­ated pre­cau­tion­ary mea­sures.

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