Growth-hormone treatment too expensive
By Xu Junqian (China Daily)
Updated: 2010-11-24 09:53
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For members of the Chinese Little Person Association, 1.81-meter-tall Li Xiang is a living dream.
They call him "little Yao Ming", after the Chinese basketball legend, and hope that one day they too will grow from a 1.07-meter-tall dwarf into a person of normal height.
"After years of treatment, when I finally attained normal height, the strongest feeling I had was that of being independent," Li says.
Chen Lu, public relations director of GenSci Medicines, sponsor of the association, says that Li's life is an inspiration.
"Earlier, Li's inferiority complex meant he hardly said a word. But now, he is the one in the association who encourages other dwarfs not to give up treatment," Chen says.
Born with hypo-pituitary dwarfism in 1987 in a remote village in Shandong province, where the doctors understood little about his condition, Li spent a frustrating childhood like many other little people in China.
Kids called him "monster", bullied him and beat him up. Adults tortured the little boy in more subtle ways, exchanging surreptitious looks and whispers.
Even Li's accurate diagnosis at the age of 6 in Shanghai, did not bring the family any relief.
Li's dwarfism, caused by the deficiency of a growth hormone, is commonly attributed to gene mutation or damage to the pituitary gland at birth. But it is not hereditary and can be treated if caught early enough.
But not every family, especially those like Li's, with an annual income of around 10,000 yuan ($1,510), can afford the treatment that costs more than 100,000 yuan and last for years.
"The first question doctors asked my father after diagnosing my condition was, 'What do you do for a living'. On learning that he was a mechanic, the doctor simply sent us back home," Li recalls.
Fortunately, in 2000 a Chinese medical company was running test trials for its new growth hormone drug.
Li seized his opportunity for treatment.
"Li Xiang is very lucky, not only because of the help he received, but also because of his physical condition," says Li Guimei, physician from the Endocrinology Department of Shandong Provincial Hospital, and the doctor who oversaw his treatment.
"He came to me for treatment at the age of 13. Usually, bone growth slows by 16, but his bone age was that of a 6-year-old ."
However, despite all the attention he gets in the association, Li still lives in the shadow of having once been a dwarf.
The 23-year-old has few friends, no girlfriend or a job in his hometown, where everyone knows his past.
Despite being a college graduate with a major in mechanics, Li works as a helper at a lottery booth run by his mother.
He continues to be treated for a deficiency of sex hormones, a common co-condition of dwarfism, according to Li Guimei, the doctor. "One-third of dwarfs suffer from sex hormone deficiency, which may cause infertility or an inappropriate representation of sexuality," he says.
Li was not willing to talk much about this but that suggests it causes him much pain - physically and mentally.
When asked what his dream is, he is silent. Then, after a long pause, murmurs: "I hope I can be cured soon and find a girlfriend to get married."