Muscular dystrophy sufferer aims to help patients

Members of the Neuro-Muscular Disease Association of China (MDA China) play with a ball during a gathering. Photo/Shanghai Daily

Get drenched in ice water or donate to the ALS Foundation. The ice bucket challenge to raise awareness of amyotrophic lateral sclerosis — a neuromuscular disorder — has swept China with participants ranging from celebrities to ordinary people.

So far, the campaign has raised more than 6.89 million yuan (US$1.14 million) for the China-Dolls Center for Rare Disorders (CCRD), a non-profit organization that received only 2 million yuan in 2013.

CCRD, though not a specific organization for ALS, says it will use the money to help more patients with diseases including neuromuscular disorders.

The very successful marketing campaign has brought unprecedented attention to the disease. But for 50-year-old Zhu Changqing, initiator of the Neuromuscular Disease Association of China (MDA China), there are many ways people can help other than having a bucket of ice water dumped over their heads.

Zhu is also a muscular dystrophy patient, having fought the disease for about 20 years.

She says giving a donation or participating in related volunteer works may provide more direct help. An electric wheelchair, a non-invasive ventilator, or an eye-tracking system will help improve the lives of the sufferers and help them live with dignity.

Neuromuscular disorders are inherited. They cause muscles to become progressively weaker. They eventually kill the sufferer when the muscles for swallowing, breathing or even heartbeat fail.

In China it is more widely known as jian dong ren (literally "gradually frozen men"), which aptly describes patients' gradual loss of control of their muscles until they become paralyzed, or "frozen."

The disease ranks as among the five most serious ailments in the world, along with AIDS and cancer, for which doctors have no cure. Patients have to rely on medication and physical treatments to relieve symptoms. There is estimated to be 4.5 million muscular dystrophy sufferers in China, with about 50,000 in Shanghai.

Many sufferers also struggle to cope mentally with the disease.

"Being diagnosed with muscular dystrophy in 1993 was a nightmare that shadows me in the prime of life," says Zhu.

Because it's a genetic disease, Zhu chose to break up with her boyfriend since she could not give him a normal family with a child. Though she passed all the entrance exams for a doctorate at a local university, she was rejected because of her health problem. Feeling depressed and helpless, Zhu got through the psychological low ebb when she realized there was still something important for her to do.

"A friend of mine told me that I was not alone. There must be other muscular dystrophy patients in the country who also are depressed and in urgent need of help," says Zhu.

Inspired by the world's first muscular dystrophy association set in 1950 in the US, Zhu started to prepare for China's own association — the MDA China — in 2002. In Zhu's blueprint, the association would gather doctors, researchers and patients to promote research into the disease, provide service for patients and raise public awareness. She hopes that her efforts will bring as many patients "out of the dark" as possible.

However, the association still has not been approved due to complicated "technical problems." In spite of that, it has brought light to some patients in Shanghai through its programs during the intervening 12 years. This includes a website providing medical information, group psychological counseling for patients and their families, outings that help sufferers get out to visit places they otherwise might not be able to, and door-to-door volunteer service on educational courses, rehabilitation therapy, and nursing instructions.

"Most of the patients that I have contacted are mentally strong, with great passion for their life regardless of their physical problems," says Cindy Qin, a volunteer with the MDA China for eight years.

Contracting the disorder at eight months of age and finally getting diagnosed at three, Jack Feng, now 29, never had a chance to study at schools. With the help of courses provided by the association-to-be, Feng passed the top Japanese Language Proficiency Test and became a professional translator, even though he can only control two fingers and his mouth at the time.

"I always consider myself a lucky guy who crawled from hell to the man's world," says Feng. "It is just because I was so close to death that I cherished the moment of living better."