First China LAM Conference Held in Beijing Rare Disease Sings For Social Care

Business Agency, November 30th, November 28th, the first China LAM (lymphatic fibroid) conference was held in BeijingDomestic
200 medicalexperts and nearly 50 LAM patients from all over the motherland gathered in Beijing to advise on the research and treatment of LAMlymphomaoma (LAM) is a rare respiratory disease that occurs inwomen, with an average age of 30-40 years, with an adult female prevalence rate of about 1/400,000, although in adult strains with hereditarydiseaseannals sclerosis (TSC), lam is as high as 1/3000Gas chest and breast milk chest are often the first symptoms of LAM, and can occur repeatedlyWith the development of the disease, breathing difficulties appear and increase sexually, and finally more serious respiratory failureIn China, the literature report on LAM can be traced back to the 1980s, so far, the cumulative number of reported cases is less than 200Professor Xu Kaifeng of the Respiratory Department of Beijing Concord Hospital told reporters that the gas and chest is often the first symptom of LAM, and can occur repeatedlyIn addition, it will be accompanied by hemorrhage, chest pain and other symptomsMore than half of the patients develop chest, and about 30% of patients exhibit breast palaeontised symptomsMost patients have developed signs of reduced activity endurance before they develop symptoms, and breathing difficulties become increasingly apparent and aggravated as the disease developsXu Kaifeng, of the , pointed out: "The most important thing that should be paid attention to is the phenomenon that LAM is often misdiagnosed and misdiagnosed clinically." "Clinically, not all patients require pathological diagnosis, and diagnosis can be made with typical clinical syndromes and performance characteristics "Some of the LAM patients interviewed by Xu Kaifeng were suspected of tuberculosis and treated "In fact, as a respiratory doctor, a clinical diagnosis of LAM can be obtained through the patient's medical history statement and typical chest high-resolution CT imaging If the clinical lysage of LAM is highly suspected, and the patient is accompanied by nodule sclerosis or renal amyratic tumor, the diagnosis can be established Xu Kaifeng said that the real diagnosis also depends on a pathological examination, patients usually have to undergo a chest screening under the lung biopsy the current research on the mechanism of LAM has made substantial progress Although the researchers speculated that the disease had a link to estrogen levels, there was not enough evidence in the actual study to prove it, which led to a lack of effective treatment However, in recent years, rapamycin has been used in the treatment of LAM patients Although rapamycin's treatment of LAM is still in clinical trials But Xu Kaifeng believes that with the in-depth study of LAM, new treatments will definitely be applied to the clinic March 30, 2006, Lam China Care Association, or LAM China, was co-sponsored by xiaoli, a sick friend, and Professor Xu Kaifeng of Beijing Concord Hospital Its purpose is to provide LAM patients with LAM diagnosis and treatment information and exchange platform, and is committed to promoting clinicians to understand and understand the disease, calling on all sectors of the community to pay attention to this rare female disease, pay attention to these vulnerable, socially neglected special groups of women, promote LAM research in China At present, there is the only non-governmental public welfare organization in China that promotes and studies LAM lin Lin, president of the China LAM Care Association, , called on the government to step up publicity on rare diseases so that the public can correctly understand and understand rare diseases, and as soon as possible to formulate special laws and regulations on rare diseases
legal , to protect the rights and interests of patients with rare diseases to provide a clear legal basis Indeed, "no money for treatment" and "no cure" have become two mountains that weigh on many LAM patients "A lot of times, sick sisters are encouraging and caring for each other through the Internet to gain the confidence to fight and overcome the disease, " lin said What they need most is the attention and care of the whole society If the medical community can study the effective treatment of LAM earlier, if the monthly cost of medication can be included in health insurance, if everyone's care will continue forever, then the dawn of life may not be far away "
The Beijing Concord Medical Foundation LAM/TSC Rare Diseases Special Fund was formally established on 15 January 2010 and accepted by individuals and institutions The LAM/TSC Rare Diseases Special Fund will be used for the clinical and related basic research of LAM/TSC, including the beijing Concord Hospital the establishment of LAM and TSC specialist clinics, attracting and helping more doctors across the country to participate in THE clinical and research of LAM and TSC, establishing patient databases, developing blood testing methods, conducting clinical studies on new drugs, promoting relevant basic research, strengthening international scientific cooperation, and the website construction and activities of the National LAM and TSC Patient Organization 'The foundation is not only a charity, but also a part of the hospital and society's care for patients, ' said Lang Jinghe, chairman of the Beijing Concord Medical Foundation, beijing, and professor of obstetrics and gynecology at Beijing Concord Hospital On the one hand, we can win social and private financial support for the patients with rare diseases, to some extent, to solve the urgent needs of some patients, on the other hand, it can also promote the development of hospital medical, teaching and scientific research, so as to better serve patients (Journalist Qiu Jianmei)