Gaucher disease patient survival condition survey: 61. 9% of patients are misdiagnosed

by:Celecare     2020-05-19
On December 30, 2019 28 gaucher disease patient survival condition survey report released in Beijing. According to a report, 61. 9% of the patients had the misdiagnosis of experience, 27. Need to 1-9% of patients Five years before diagnosis; Adequate medication can make patients have a better ability to act, more than three-quarters of people don't need to rely on assistive devices. Pain by Beijing challenge public foundation and the Chinese association of gaucher disease the living situation of the host of the 2019 patients with gaucher disease research conference and the 4th gaucher disease patients will be 28, held in Beijing. Research report published the day according to the China association of gaucher disease and charitable aid provided by China charity federation, 226 patients medication in patients with real data show report for its survival. According to introducing, gaucher disease is a rare inherited metabolic disease, patients with lack of glucose in the body fat enzyme, main symptoms for growth and development lagging, hepatosplenomegaly, anemia, patients often multiple organ damage, and even life-threatening. Two-thirds of patients with gaucher disease in childhood onset. The survey report shows that 61. 9% of the patients had the misdiagnosis of experience, 27. Need to 1-9% of patients Five years before diagnosis, 5. Need to 6-3% of patients Ten years, there were 2. 7% of patients will need to spend more than 10 years of time to understand their illness. Report also shows that as time goes on, gaucher disease a gradual decline in the proportion of misdiagnosis, diagnosis time is shortened, the proportion of the disease was diagnosed in patients with rising gradually. The indications are that the Chinese medical workers for gaucher disease in improving the cognition, can help patients more accurate medical treatment as soon as possible. At the same time, the parts of gaucher disease risk screening programmes, to make patients diagnosed quickly to shorten the time. In addition, this research analyzes the drugs in patients with gaucher disease burden of disease and quality of life of the role and influence. Research results show that the adequate medication can make patients have a better ability to act, among them more than three-quarters of people don't need to rely on assistive devices, two-thirds of the people to fully provide for oneself, live independently, without medication in patients with more than 60% have action. Medical adviser to China association of gaucher disease, the Chinese people's liberation army general hospital first medical center pediatrician Meng Yan said: expert consensus at home and abroad are recommended enzyme replacement therapy ( The m glycosides enzyme) Is the standard scheme of gaucher disease patients, can delay or even reverse the disease process, liver and spleen volume, in addition to rapidly improve the hematology indexes, still can alleviate bone pain, but the improvement of bone disease problems need to be more long-term, norms glycosides enzyme treatment, supplemented by other drugs, even surgical treatment. After treatment with long-term specification, gaucher disease patients can be normal work and study, can also be normal marriage, birth. Patients would be able to get treatment, is sustainable, adequate medication, for patients in the physical, psychological, economic, and social and so on various aspects will have a significant impact. The Chinese university of Hong Kong school of public health and basic medical research assistant professor dong dong said. , according to a report in patients with adequate medication, completely own bear all medical expenses, need for spending more than 2 million yuan per capita. In order to solve the problem of drug use, drug use expensive rare disease, China's more for rare diseases had different degree of exploration. In November 2019, by zhejiang province medical insurance bureau drafted on establishing a rare disease in zhejiang province medical safeguard mechanism of notification ( Draft) ', the establishment of the province as a whole fund of rare diseases, the rare diseases, including gaucher disease, special drugs into the safeguard scope, the amount to be paid in patients with the highest 100000 yuan. In addition, Shanghai has for years been through charitable fund of several children's rare disease provide security policy; Qingdao areas through multilateral security system for part of the total pay rare diseases pioneered a serious illness medical relief mechanism. Gaucher disease patients than many other rare disease is lucky, because they have a cure. On behalf of the China charity federation guitar ping said: in the future we hope to continue and the parties hand in hand, make China's overall level of diagnosis and treatment of rare diseases, medical system to further improve. Calls for the social from all walks of life concerning rare diseases group at the same time, can let more patients with treatment, drug use.
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