Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH. “What’s the problem today? Why did I ate so little?” They were last words that Xiaoxin left at my micro-blog. She was under her 23 when she passed away. She was a happy, lively, but independent girl in our eyes. She suffered from serious PAH (pulmonary arterial hypertension) caused by complete atrioventricular septal defect (CAVSD). She had not received targeted medical treatment due to economic problem. She worked as a customer service for a travel agency and paid her medicine bills. She also ran an online shop, selling Vietnam specialties. She often made fun of herself as a cashew nut girl. On March 1, 2013, she wrote in her micro-blog, “I am 22 and suffer from CAVSD A type, serious PAH. I have been taking vardenafil for 3 months. I had chest congestion at 9, and felt pain from the left cervical artery to the last rib of the left side chest. I laid for oxygen till 11, but I still felt obvious suffocated and difficulty in breathing. The swelling pain became more serious in the left side chest.” No March 4, 2013, she wrote, “I am fine tody and it is fine, too……, I am happy today……(PS: I also gave my mum 20 yuan generously and she will buy fruits for me)” Although she suffered from the disease, her optimism and independent were with us. She helped us to forward micro-blogs and to encourage other patients. This is the box of cashew nut I bought from Xiaoxin’s online shop. We just finished the cashew nuts. The girl who wrote these lines passed away unexpectedly. Original article written by Huan Huang, translated by Maggie Li and edited by Yanyan Zhang Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.
On February 23, 2013, Iseek Cultural Center participated in activity themed on Let Love Fly—2013 public-interest performance for the international rare disease, aiming to appeal for rare disease groups and hoping more people care about them. Tang, our patient, played guitar. Audiences gave her warm applause after she finished and asked her to perform one more. She said to me with excitement when she went to the backstage that she was so nervous that her legs were shaking, but she did not forget the words. This was her first time to perform for about 500 audiences. We were so happy for her progress and looking forward to her more wonder shows in the future. Original article written by Huan Huang, translated by Maggie Li, edited by Yanyan Zhang Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.
In 2012, Iseek made great progress in service for PAH patients and its publicity. It also completed its internal-building and developed liaison links. We completed following jobs in 2012. |
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