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Messagepar kya » 18 Août 2018, 10:00

Han Shuo leaves her home for school as the new semester begins in September. Photo: Li HaoGT Han Shuo plays with her 11-month-old brother Han Bokang at home. Photo: Li HaoGT
Eight-year-old Han Shuo looks no different from any other young child. She is quiet Mikkel Boedker Sharks Jersey , loves reading, doing origami and watching singing competitions on TV.

However, she never takes part in sports at school, has to be extremely careful when climbing stairs, and when she has nosebleeds, it takes more than three hours to stop.

When she stands, even her ankle-length cotton dress can't hide the fact that her belly has swollen up like a pregnant woman's: her spleen is almost 40 times the normal size.

"She had wanted to become a doctor when she grows up, but the doctor said there's a possibility she won't live past 8 or 9 Tim Heed Sharks Jersey ," Han Shuo's father Han Qi said.

Han Shuo, living in Tianjin, was diagnosed with Gaucher's disease in 2009, a genetic disease that makes an enzyme defective and causes a fatty substance to accumulate in cells and organs. In Han's case, it makes her anemic, enlarges her spleen and obstructs her skeletal growth.

Enzyme replacement therapy is the only method to reduce the size of her spleen and keep her blood level stable, but the medicine costs about 2 million yuan ($329,456) per year.

Gaucher's disease is categorized as a "rare disease." According to the World Health Organization Melker Karlsson Sharks Jersey , a rare disease is one that affects a small percentage of the population, ranging from 0.65 to 1 in 1,000. However, China does not have a clear definition of a rare disease. Moreover, the medicine developed to treat these diseases - often known as "orphan drugs" - are too expensive for patients, and sometimes not produced because of low profit margins.

Activists are pushing to get these orphan drugs included in national medical insurance and trying to make rare diseases more known to the public. Meanwhile, patients like Han are still faced with a dilemma.

Treatment dilemma

Han Qi first realized something was wrong with his daughter in 2009. Han Shuo's uncle was playing with her and felt a hard lump under her rib, where her spleen was.

Worried Kevin Labanc Sharks Jersey , Han Qi took her to a local hospital in Ji'nan, Shandong Province, and later in Beijing. The results shocked him.

"The examination report said she had Gaucher's disease. We had no idea what that was, but the doctor told me it was really bad. It's an extremely rare disease," he said. "There's no good cure for it."

There's no clear definition of what a rare disease is or how many rare disease patients there are in China right now, said Han Jinxiang, Party secretary of the Shandong Academy of Medical Sciences. However, research is being done to expand the amount of scientific and official data.

On February 28 Justin Braun Sharks Jersey , 2013, 17 medical institutions from 13 provinces launched the China Rare diseases Prevention and Treatment Alliance, China's first national organization against rare diseases.

Han Jinxiang, who is also the deputy director of the alliance, said the organization will assist in data collection of rare diseases, carry out epidemiological studies and improve treatment. One current project is conducting research into how many types of diseases can be considered rare, he said.

There are more than 6,000 rare diseases defined internationally Chris Tierney Sharks Jersey , but treatment and medicine exists for only about 1 percent of them. Of these treatable diseases, China has almost no domestically produced medicine, Han said.

"There are few rare disease patients in China and the government doesn't have any policy subsidizing the production of rare disease medicine, so the pharmaceutical companies don't have any interest in producing such drugs," Huang Rufang, president of the grass-roots Chinese Organization for Rare Disorders, said.

Because of their specialist nature, some countries have a "green channel" for the examination and approval of those drugs. In the US Tomas Hertl Sharks Jersey , the Food and Drug Administration has an Office of Orphan Products Development, whose mission is to "advance the evaluation and development of products that demonstrate promise for the diagnosis andor treatment of rare diseases or conditions." The office also provides incentives for sponsors to develop products for rare diseases.

However, the lack of such a mechanism in China directly results in these drugs being imported from abroad and means they usually aren't covered in national medical insurance. There is no way families like Han's can afford it.

Awareness needed

Another issue facing rare disease patients is that the disease is not well-known, Han said.

According to Han's rough estimates, before being officially diagnosed, 30 percent of rare disease patients need to see 5 or 10 doctors, nearly half are misdiagnosed with some other disease and 75 percent cannot receive scientific, regulated treatment plans.

For Gaucher's disease Martin Jones Sharks Jersey , the treatment plan is still being developed.

Song Xiaofang's daughter, 4-year-old Cao Linfei, was also diagnosed with Gaucher's disease in 2012. Cao had come to within inches of death at the beginning of 2013, and the doctor at the Naval General Hospital in Haidian district suggested hemopoietic stem cell transplant.

For a brief six-month period, Cao was China's first successful case of hemopoietic stem cell transplant being used to combat Gaucher's disease, after her operation in April. However, in October, her blood platelet level came down again.

The parents Joonas Donskoi Sharks Jersey , who had already spent 600,000 yuan on the treatment, are baffled. Zhang Bo, Cao's clinical doctor, said that the symptoms she's showing are a complication from the transplant, but he can't be absolutely certain whether she can recover again.

When Han Qi was informed of Cao's condition, he gave up on the idea of letting Han Shuo go through with a transplant. An operation may not work so well

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