SUFFERING NOT JUST PHYSICAL

Given that medical bills amount to 10,000 to 20,000 yuan a month, roughly the same as the per capita disposable income for Chinese urban residents in 2013, many patients and their families have been financially and emotionally devastated, according to an I SEEK survey.

Of the 1,497 patients registered with the organization since it was established last November, 41 percent are jobless and have no stable income. Some 98.2 percent feel helpless and find it difficult to communicate their situation to others.

"Except for breathlessness, dizziness and leg swelling, we look as normal as every healthy person does when the illness is in the early stage. Patients and doctors may both mistake symptoms as asthma or respiratory disease," said Huang Huan, a PAH patient and co-founder of I SEEK who received a lung transplant years ago.

"But as the illness worsens, we may faint and spit blood. Routine activity such as climbing two flights of stairs or taking a shower becomes an enormous challenge," she said.

Doctor Li Xiansheng said it normally takes two or three physicians to correctly diagnose each patient.

"It's difficult to explain our situations to our colleagues. We hate to be called lazy in the office," said Huang. "It's not that we loaf around on the job, but that we are not physically capable."