Rare Disease Day: LAM patients sing despite breathing pain

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February 28 marks Rare Disease Day around the world. Those struggling with rare diseases suffer in ways most of us will never know. One Beijing woman, fighting rare lung disease for 13 years is using her voice... and not just to raise awareness.

You wouldn't know from one look at singer Long Lin that every breath brings her pain. As founder of the LAM Acappella Chorus, Long is one of the 600 women in China suffering a rare disease called Lymphangioleiomyomatosis, LAM for short.

Long Lin, founder of the LAM Acappella Chorus who suffers from LAM. /CGTN Photo

"In 2006, I woke up one morning with tremendous pain in my lungs. I couldn't stand up straight. I went right to the hospital for what ended up being a seven-hour surgery," Long recalls.

One month later, she was diagnosed with LAM, the fourth such patient diagnosed nationwide. A progressive lung disease that usually strikes women during their childbearing years, LAM can be life-threatening. Thirteen years ago, there was no effective treatment.

"I was very weak, I thought I was dying. The doctors didn't know what to do other than transfusing blood for me. But I later got a fever from that. So they told me to go home, saying there was nothing they could do," recalls Long.

She spent months in bed, coughing constantly, and unable to sleep or eat. Finally, in 2008, an old drug used for transplant patients was found to slow the progression of LAM. She started taking pills, with one case lasting five days, costing over 400 yuan, or 70 U.S. dollars.

LAM was listed in China's First List of Rare Diseases published in 2018. /CGTN Photo

"The fundamental way to save us is with a new drug, which I hope scientists can develop soon," Long says.

To increase public awareness, and to train her respiratory system, Long founded this chorus. Their four Chinese characters on their jackets say "I want to breathe."

Not all members are LAM patients. Tian Xiangrui works in a pharmaceutical company. She volunteered in this chorus to help bridge the company and the group.

"I hope to increase dialogue among these friends and the drug industry, so that more drugs, and hope, will come along for them," says Tian.

LAM Acapella Chorus rehearsal. /CGTN Photo

Long also leads a center to help other LAM patients. Some have died as soon as one month after diagnosis. She says it'll be lucky if others can survive for 30 years.

"I knew how I should live my life until I got sick. I think the mission of my life is to return the love I felt," Long said.

The chorus aims to help LAM patients get more effective treatment and greater care from society. As the slogan of this year's Rare Disease Day advocates, "Show Your Rare, Show You Care."