Published by JaneLee on 05 Sep 2013 at 01:30 pm
This week’s featured woman, Sister Juan, is a vocal advocate for thalassemia patients in Guangdong Province, China. Thalassemia, a blood disorder that reduces the number of healthy red blood cells and hemoglobin in the body, is a prevalent issue in her community. Sister Juan was nominated and interviewed by WiserChina intern Cupid Liang.
By Cupid Liang
Read this blog post in Chinese.
He Shujuan, called Sister Juan, is the president of Guangzhou Thalassemia Community, head of Guangzhou YMCA’s Thalassemia Project, and director of the Thalassemia Association of Guangdong. Her daughter Lily was diagnosed with severe thalassemia at the age of one. She felt desperate and broken down. But Lily’s words, “Mom, I feel cold and I’m hungry, let’s go back home and cook,” woke Sister Juan up.
After a divorce, Sister Juan shouldered all responsibilities alone. In order to raise money for Lily’s medical expenses, she worked as a cleaner and a nanny, and she has had many other part-time jobs as well. She has persevered for 21 years. Miraculously, Lily is now 22 years old, defying the doctor’s statement that she would not live more than 18 years.
Sister Juan understands the hardships of families impacted by thalassemia, and she frequently participates in outreach activities about the condition. She views every patient with thalassemia as her own child. As a result, she is known as the Mother of Thalassemia Kids.
Sister Juan and Lily
Here is part of my chat with Sister Juan:
Q: What is it that has carried you through many obstacles during the past 21 years?
A: Confidence and my responsibility to my daughter. She has the right to life and I can’t deprive her of that.
Q: What’s the biggest challenge or obstacle in pursuing public service?
A: Perseverance. It’s easy to do volunteer work once or for a day, but it’s extremely difficult to stick to it for a long period of time.
Q: What are your thoughts about pursuing high-profile public service?
A: I am usually high-profile and I always do outreach via Weibo, QQ, and other media. I’m not trying to show off—I merely want to influence others by my acts and attract more like-minded people to join us. What I want is something like the Butterfly Effect.
Q: When faced with kids undergoing treatment or even the death of some kids, how do you deal with such situations?
A: I do feel desperate when faced with their deaths and I will feel hesitant about whether I should stick to it. After a period of hesitation, I keep on working for those kids with thalassemia because I feel I can’t—and I’m not—willing to ignore them and their families who are suffering.
Q: We know that both the government and NGOs have made efforts to help thalassemia patients. Do you feel satisfied with what the government has done?
A: No, what the government has done is far from satisfactory. Aid for thalassemia patients is far from enough and far from regular. Guangdong suffers a high rate of thalassemia and help from NGOs is weak. Even if I were Bill Gates, I couldn’t help such a large number of patients. So, it’s important for the government to make efforts in the following areas. First, it’s of great importance to spread knowledge about thalassemia and teach the importance of prenatal tests. This can help avoid unnecessary tragedy. Second, in regards to the thalassemia patients, the government should do more to support them. Third, it’s essential to reinforce basic training for medical care personnel.
Q: What is your cherished desire?
A: I hope each patient can get rid of thalassemia.
Interested in learning more about Sister Juan’s work? Connect with her via Weibo.
Would you like to nominate someone for Wiser’s Women of the Week? Tell us here!
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