Teenager fights rare disease |
http://www.sina.com.cn 2005/04/26 18:33 Shanghai Daily |
A local 16-year-old boy is suffering from an immunity system ailment that is so rare it took medical experts at several local hospitals almost a year to come up with a correct diagnosis. Zhang Lufen suffers from relapsing polychondritis, an uncommon and severe episodic inflammatory condition involving cartilage, predominantly those of the ear, nose, and bronchial system. It can affect the eyes, ears, cardiovascular system and peripheral joints. Zhang's family said they hope the local medical community can accumulate experiences from treating Zhang and improve their ability to diagnose patients with the same ailment in the future. The disease affects three to four people in every 1 million, and kills about one-third of those who contract it within five years. Zhang is being treated with both western and traditional Chinese medicine, but his ailment is still not under control. According to his mother Lu Cuijuan, Zhang suffered from serious coughing and a long-running fever since March last year. He has been hospitalized in four different medical facilities, all of which failed to correctly diagnose his ailment. "When we were frustrated with the mysterious disease, my son's condition deteriorated. His heart even stopped beating in a hospital on November 20 and he had to have a tracheotomy," Lu said. Zhang has needed a respirator to breathe since then. "I had wished that doctors didn't pull me back at that time. Then I wouldn't have to suffer so much, especially when no one can tell me what the disease is," said Zhang, a grade-nine student. While doctors at Renji Hospital were finally able to diagnose the condition in February, the disease is so rare that no one in the city has successfully treated it. "Currently, we only treat Zhang with hormone therapy," said Dr Bao Chunde from Renji Hospital. He said the disease can lead to blindness, deafness and cardiac problems. "No matter how hard and costly it is to save my son, we will try our best," said the mother. "We will sell our apartment if necessary. He is our only child and we can't lose him." |
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