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Chapter 748 Sun Lien Syndrome
Over-the-range drug use means that in order to treat or control certain diseases, doctors are unable to use those drugs that can cover the disease due to the patient's economic ability, drug supply and other factors, but instead use other drugs that do not indicate this range in the instructions Behavior.

To give a relatively simple example, some "self-media" once used a standard headline party news headline to attract readers, "Seven-year-old girl bought aphrodisiac medicine alone in the pharmacy in the middle of the night..." In fact, this is a case of comparison Typical example of over-the-range drug use.The little girl in the news suffers from pulmonary hypertension, a disease that can only be cured with surgery.Drugs can only barely maintain the situation and try to slow down the progression of the disease.

There are currently two main types of surgery used to treat pulmonary hypertension - balloon septostomy and transplantation.The most ideal transplantation is combined heart and lung transplantation, but donors are scarce and the price is extremely high.For the relatively common atrial septostomy, the cost of basic treatment starts at 30 yuan.If the patient's condition is complicated and serious, the cost of treatment may be [-] to [-] yuan.

Although Zhihu is full of anxious examples of modern young people earning 3000 a month, residents with a monthly income of less than 70 account for as high as [-]% of the total population.The treatment fee of about [-] is a huge expenditure that is unaffordable for a large number of families.

Compared with the cost of surgical treatment, the price of sildenafil is much lower - after losing the patent protection period, the price of domestic sildenafil is only about 12 yuan to buy one pill.Various studies have shown that this drug, which is used to treat male sexual dysfunction, has a very good alleviating effect on pulmonary arterial hypertension.

However, in the instruction manual of sildenafil, the indication is only "male new dysfunction". Therefore, the little girl's purchase of sildenafil for the treatment of her own pulmonary hypertension is actually an obvious "excessive disorder". range of medication".

The over-the-range use of sildenafil is based on the direction of the original research and development of the drug and the plan obtained from a large number of experiments.It has a large amount of research data and actual use experience as evidence.But with arginine vasopressin... the risks are much higher.

According to the current regulations, it is not impossible for doctors to over-dosage patients.After all, the clinical situation is always more complicated than the regulations, which requires the relevant departments to adopt a more flexible attitude from the very beginning in order to effectively deal with various situations in reality.Therefore, adult patients only need to be specially informed and sign a consent form to start over-the-range drug treatment.

But Tang Min's situation is a bit more special.

The diagnosis of insufficient expression of AQP4 protein has been unanimously agreed by all doctors in the two diagnostic groups, and the current evidence in the hands of the diagnostic groups is also sufficient.But... this is a disease that has never been discovered.It was going to be treated experimentally, and the patient was still a minor... Thinking about the various tasks and procedures involved, Sun Lien felt his scalp go numb.

After all these years of being a doctor, other improvements may not be particularly obvious.But when it comes to paperwork, Sun Lien thinks he has made breakthroughs and progress in CUHK.At least he won't be too scared when he sees a thick stack of documents now.

"Approval from the Ethics Committee is definitely required." Sun Lien nodded vigorously in agreement with Professor Zhang's reminder, "And I think...it is also necessary to ask experts from other hospitals to have a look."

Sun Li'en said this not only because he was cautious.He also had other considerations - if Uncle Tang Min's blood sample could be collected and analyzed together with Tang Min's mother's blood sample, it would basically be announced that AQP4 protein deficiency had been officially discovered.The discovery of this brand-new disease not only has a direct location at the genetic level, but may even provide a fortunately effective treatment at the same time.This is a boon for other patients who may suffer from insufficient AQP4 protein expression.

But...the academic ability of the Fourth Hospital may not be able to support them to complete relevant medical records and follow-up in-depth research.

Although Professor Zhang Zhifu is very capable, he is not an expert in genetics after all.And although he has a teaching position, his job is still a front-line clinic.More importantly, due to the impact of the disease, Professor Zhang...he may not last until the day when the research is completed.

Academic research not only depends on ability, but also considers a series of conditions including the energy and health of researchers.Sun Lien believes that academic ability is not enough to perfect this research.Xu Yourong and Yuan Ping'an can do it, but they don't have too urgent demands for a thesis right now. On the contrary, they are usually busy with work, so it is difficult to take care of it.

Needless to say, Dr. Brunn has basically never done any scientific research himself.From the beginning of work to the present, they are all clinical talents through and through.Although Dr. Pascal has his own laboratory, he is now focusing more on research on immune-related mechanisms.When it comes to hereditary diseases...he's not right either.

After thinking about it for a while, Sun Lien was sure that if this case stayed in the diagnostic center or even in the fourth hospital, it might not be able to proceed smoothly.Even if the research can be completed and published, it may take a long time.

At this time, the best way is to bring in experts from other hospitals.They were able to offer suggestions for Tang Min's treatment, and they were able to complete the follow-up work of relevant research. Most importantly, they not only worked hard, but also felt grateful to the Diagnostic Center and even the Fourth Hospital.

After all, other hospitals do not encounter such opportunities every year.In fact, apart from SARS, Keshan disease was the only disease first discovered by Chinese doctors.

"We should invite experts from other schools to discuss it together." Professor Zhang Zhifu was keenly aware of Sun Lien's intentions.He was not dissatisfied with this, but nodded appreciatively, "If it is really confirmed that the AQP4 protein underexpression syndrome exists, it will be a good thing for other patients." With a kind smile, "Then I think this symptom can be named 'Sun Li'en Syndrome'."

It's an old joke that's been around for years, about a good news and a bad news that a doctor has to deliver to a patient. "The bad news is you're going to die, the good news is we're going to name this disease after you."

In fact, in the field of medicine, like other fields of natural science, naming is basically based on the discoverer.And among these discoverers, quite a few will choose to use their own names to name this particular disease.

This is an honor, an honor that Sun Lien never thought of.He was about to open his mouth to evade, but he heard the laughter and approval of the surrounding doctors, "Indeed, Sun Li'en Syndrome, the name is really good!"

Yuan Ping'an smiled while wiping tears, and patted Sun Li'en's shoulder and said, "I hope this little girl won't be like you in the future, her face is so dark that there is no cure."

　Regarding the diseases first discovered and named by Chinese doctors, Sanguan has not found sufficient evidence so far. At present, I can only confirm that the three diseases of the new crown, SARS and Keshan disease should be discovered and named by Chinese doctors for the first time.

　　Sanguan’s personal ability is limited, and his knowledge is indeed lacking. If other readers know of diseases discovered and named by other Chinese doctors, please leave a message to tell Sanguan.

　　
　
(End of this chapter)