Support plan for rare spinal disease released at CIIE
A "Super Mama" support plan to help spinal muscular atrophy (SMA) patients and their families was released at the 5th China International Import Expo.
A program offering support to families with children ailing from spinal muscular atrophy, or SMA, a rare neuromuscular disease which seriously impacts life quality, was released at the 5th China International Import Expo.
The "Super Mama" support plan, which is initiated by Roche Pharma and its partners, provides whole-process support from screening, diagnosis, treatment and help to SMA patients and their families.
The organizers specially shot a documentary featuring two mothers with SMA children to share their stories. The film was released during the ongoing CIIE, calling for more social awareness and support for rare disease sufferers and their families.
There are nearly 30,000 SMA patients in China, with about 1,500 new cases each year. The incidence is one in every 10,000 newborn babies.
SMA is a progressive disease, which can cause abnormalities in systems like respiration, digestion and bone. If not treated effectively in time, 80 percent of babies with serious condition can die within one year due to respiratory failure and few children can survive over two years.
For patients, who develop the problem in adolescence or adulthood, their symptoms are likely to be confused with other neuromuscular diseases. It usually takes a long time for a correct diagnosis. Many patients suffer complicated spinal deformity, seriously impacting their life quality, medical experts said.
"With the development of medical science, there are multiple therapies for SMA. In addition to innovative medicines, patients and their families need more support and care to improve their compliance and health management level," said Dr Wang Yi from Children's Hospital of Fudan University.
"The 'Super Mama' plan is a good example and we hope it can bring more comprehensive support to SMA patients."
