A woman's fight against a rare lung disease
- By Phoebe Wu
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E-mail China.org.cn, June 1, 2016
She's an activist, an NGO founder and a patient suffering from a rare and fatal lung disease, lymphangioleiomyomatosis (LAM).
It has been 10 years since Eva Long was diagnosed with terminal LAM, a disease so rare that even in China, a country with nearly 1.4 billion people, there are only 500 known patients, all of them female. The progressive lung disease, which strikes women during their childbearing years, involves an abnormal growth of soft muscle cells in the lung that leads to a loss of normal lung functioning. It is estimated that for every one million women, three to five will develop LAM. While a cure has yet to be found, there are treatments and medications to slow the disease's progression.
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| Eva Long, founder and director of LAM China. [photo / China.org.cn] |
Shortly after Long underwent surgery, she and her husband searched everywhere for a treatment and cure. That was when she came across the LAM Foundation, an American non-profit organization based in Cincinnati, Ohio dedicated to researching the disease.
Refusing to accept her condition, Long quit her job at an IT company and set up her own NGO for LAM patients here in China. The organization's name, "LAM China," has a special meaning in Chinese.
"In Chinese, the word ‘lam' sounds similar to the word for blue plum blossom, which is a symbol of endurance, because it blooms in winter," Long said. "My wish is that other LAM patients can brave the hardship and never give up on fighting their disease."
Since its establishment in March 2006, Long has worked hard to reach out to other patients throughout China, utilizing social media platforms, such as WeChat and Weibo. She has also travelled extensively overseas and across China for conferences and charity events related not only with LAM but with other rare diseases also.
With only two full-time employees and four part-time workers, LAM China raises funds for members' treatment, recruits volunteers, offers counseling services and psychosocial support and disseminates information regarding treatment and doctors specializing in the disease. The organization currently has 350 patients and 10 volunteers.
LAM China's work has gained international recognition. In October 2014, a LAM conference was held in Beijing. Doctors from the United States specializing in LAM attended the event and shared important information regarding the disease and treatment. At the event, Long was awarded the title of LAMbassador (LAM+ambassador) of China by the Worldwide LAM Patient Coalition (WLPC).
And LAM China's works has also attracted the attention of several Chinese actors and actresses, who had collaborated to create a PSA video to increase awareness of both the organization and the disease. Among the stars is Xu Baihui, who met Long by chance.
"I always pay attention to female health," Xu said, stating her reason for participating. "It has been half a year since I participated in this activity and I hope I can do more in the future."
People suffering from rare diseases face a hard road in China, where awareness is low and the welfare system is underdeveloped. Many of the diseases are not covered under state medical insurance, leaving most patients untreated or forced to rely on personal funding for treatment. Long is striving to change that.
"One of my goals is to persuade the Chinese government to include treatment for rare diseases, not just LAM, in our medical insurance," she said. "At the moment, awareness of rare diseases is still very low, and I hope that through the PSA we've made, we can spread awareness among Chinese people."
June 1st is the World LAM Day, and for its celebration, Long has a message for women in China: "To all the young women out there, especially if you are below 40, if you experience a sudden shortness of breath, please get an immediate checkup; it is possible that you may suffer from LAM."
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