China News Service, Liuzhou, August 19th, title: Guangxi female doctors are committed to promoting rare disease treatment and not giving up any patient
Author Lin Xin
"There are still many unknowns in the field of rare diseases. It is meaningful to discover and solve these problems and change the destiny of individuals and families." Song Xinghui, director of the Office of Rare Diseases Center, Liuzhou Workers Hospital of Guangxi, said on the 19th.
At present, although the incidence of rare diseases is low, there are many kinds of diseases.
There are more than 7,000 rare diseases identified, accounting for about 10% of human diseases. There are approximately 19.04 million rare disease patients in China.
In order to improve the level of diagnosis and treatment of rare diseases and safeguard the health rights and interests of patients with rare diseases, China has established a national rare disease diagnosis and treatment collaboration network.
Liuzhou Workers' Hospital is one of the member hospitals of the China Rare Disease Diagnosis and Treatment Network.
Song Xinghui (left) and colleagues check the patient's condition.
Photo by Lin Xin
"Although rare diseases are only a minority, one patient has a great impact on a family, and no one patient can be given up." Song Xinghui said.
At the end of 2019, the hospital opened a rare disease center.
The rare disease patients received by the hospital will be collected into the center, and the rare disease center will be responsible for contacting relevant subject experts and organizing the analysis of cases.
At the Rare Disease Center, Song Xinghui saw many uncommon first-line clinical cases.
This kind of challenge made her excited after many years of medical experience.
Previously, the hospital had admitted a 9-year-old patient.
Unlike other children, they have repeated fever every month or even every week since they were 1 year old, and it has been 8 years.
Some doctors believe that it is caused by his weak physique and has been treating symptoms with anti-fever medicines.
"The patient became very weak due to long-term pain and suffering. When we came to our hospital, we considered whether he had a rare disease and immediately initiated an expert consultation." Song Xinghui said.
After consultation and genetic testing, the doctor diagnosed it as an autoinflammatory disease, familial Mediterranean fever, and has now cleared a treatment plan.
"Although there are not many patients with rare diseases, it takes a lot of effort to promote it. Is it worth it?" Song Xinghui said that many people have such questions.
But he believes that a patient is related to the happiness of a family, can change a person's destiny, and save a family is worth everything.
Song Xinghui (left) and colleagues are making a diagnosis.
Photo by Lin Xin
Song Xinghui once looked at a patient and changed her destiny through the treatment of doctors and self-help.
Song Xinghui remembered, “The patient suffered from systemic lupus erythematosus when he was very young. There were not many treatments at that time, and the patient himself was very hopeless.” After years of treatment, the patient's condition became stable and he became friends with Song Xinghui.
"This patient has now become an active figure in the group of patients with systemic lupus erythematosus. Our hospital has received new patients, and she will use her personal experience to encourage these patients to come out."
For Song Xinghui, being able to improve the lives of others through her own efforts is the greatest sense of accomplishment in being a doctor.
"As long as people around us live better and happier lives, life is meaningful." Song Xinghui said.
In the future, Song Xinghui expressed his intention to further expand the influence of rare disease centers and deepen the understanding of rare diseases by doctors in primary hospitals, taking this as an opportunity to establish a rare disease sample database to further promote rare disease research.
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