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1. It is particularly important to do a good job in premarital examination, pre-pregnancy examination and newborn screening to reduce the incidence of birth defects and rare diseases in newborns. Rare diseases are rare. It is an indisputable fact that doctors who are able to diagnose and ** rare diseases are rarer in the country or in the world.
With the continuous development of medicine, more and more rare diseases are being discovered, and the methods are becoming more and more advanced. However, no parent wants their child to get sick and wants their child to grow up healthy and safe.
2. Before pregnancy, four eugenics, chromosomal examination, thalassemia, folic acid metabolism, etc., should be carried to see if they carry pathogenic genes. If you have a family history of heredity, you need to first check for the proband's disease. Preimplantation diagnosis or prenatal diagnosis should be carried out under the guidance of a medical professional.
Chromosomal disorders, genomic disorders, and monogenic disorders can be tested during pregnancy and regular delivery check-ups. For example, rare diseases such as hemophilia, muscular dystrophy, and albinism can be diagnosed prenatally.
3. Newborn screening, postnatal heel blood, can check for a variety of rare genetic metabolic diseases, once found, it can be timely **, intervention, the sooner the effect is better. So neonatal disease screening is the last line of defense! The environment has changed too much now to be compared to more than a decade ago, and any adverse conditions can be a contributing factor to childhood illness.
For example, contaminated water, pesticides and vegetables, substandard milk powder, etc.
4. In addition to preventing physical diseases, physical exercise can also regulate children's emotional and psychological diseases. If your child is unfortunate enough to get sick, don't despair. We should cooperate positively and optimistically**.
Now medicine is so developed. As long as you don't give up hope, one day you can overcome the disease! Exercise is the most effective way to improve physical fitness.
In addition to aiding in the growth of human bones and muscles, it can also help enhance the function of various tissues and organs. For example, it enhances body coordination, prevents fat accumulation, improves cardiopulmonary function, and eliminates toxins from the body. These are important prerequisites for protecting children from disease.
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As long as you keep yourself from eating a healthy diet, you won't get rare diseases, and you should have regular check-ups to give yourself a sense of health and security.
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In life, we should popularize this knowledge, pay attention to our physical condition, and some relatively rare diseases can be included in medical insurance, so that we can better carry out **.
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To enhance the body's immunity, it is necessary to pay attention to personal hygiene, and seek medical attention in time if the body is not well.
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These rare diseases are definitely being actively developed**, but so far the medical technology may not be very advanced, so there are some diseases that have not achieved an effective result so far, but they are actively being prepared.
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There is no way to find these rare diseases, because these diseases have not been found, so with the current medical technology and means, it is not enough to ** these rare diseases.
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I don't think there is a cure for the disease, because the probability of these rare diseases is very small, so no one has been able to study this disease.
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According to statistics, there are nearly 7,000 types of rare diseases in the world, accounting for 10% of the total human diseases. There are about 300 million patients with rare diseases in the world, and there are more than 20 million patients with rare diseases in China, and 200,000 new children with rare diseases are born every year.
Due to the difficulty of diagnosis and the high cost of drug research and development, the patient group has long been stuck in the dilemma of seeking medical treatment everywhere, there is no medicine to treat, and there is no medicine to afford.
Today is World Rare Disease Day, focusing on rare diseases, starting with understanding.
There is a saying in the rare disease patient group: "What is rarer than rare disease is the doctor of rare disease." ”
In recent years, more and more patients with rare diseases have spontaneously formed their own patient groups across the country, and we have made **, WeChat***, and APP through various forms of publicity activities to attract patients to find their own organizations.
At the same time, more and more medical institutions and doctors have begun to pay attention to the organization of patients with rare diseases.
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In everyone's traditional concept, people who suffer from diseases are already very unlucky, but there are some more unfortunate people, these people are people who suffer from rare diseases, there are 20 million people in our country who are suffering from rare diseases, these rare diseases are very difficult, and people who suffer from rare diseases generally have some very bad symptoms.
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According to the definition of the World Health Organization, rare diseases are diseases with a low incidence and a small number of cases, and the general number of people only accounts for 19% of the total population. The exact ** of this disease is unknown, and most of them are congenital diseases, such as ALS, rabbit layer, congenital heart disease, albinism, thalassemia, etc.
Rare diseases are not uncommon, they are all around you and me. At present, there are more than 300 million rare disease patients in the world, accounting for about 4% of the total global population, which also means that on average, one in every 25 people has a rare disease patient.
Rare diseases are mainly caused by genetic defects, and some are caused by infection or allergic reactions, degeneration or proliferation of the body. Rare diseases have become one of the important causes of death in children under the age of 5 in China, and many patients have been diagnosed with rare diseases at birth or in childhood.
The most common disease in life is orphan disease, which is a chronic disease, and has a great severity, which will endanger life and health. In addition to orphan diseases, diseases such as thalassemia are very difficult, and the chance of ** is less than 1%. The disease of porcelain dolls is also difficult, because the bones in the body are not well developed, so the body will be very petite, but a hug may make the patient have fractures, this disease is a hereditary disease, and it is also very difficult to get up with the current medical technology. >>>More
For China, 67% of rare diseases have been included in the medical insurance, which is also a fortunate thing for China's residents, in fact, it is also very difficult for some rare disease patients in China, after all, for these rare diseases, China's relative medical facilities are still insufficient, which leads to the fact that if one of your family suffers from this rare disease, it will be a blow to your family's economy and all aspects, and domestic rare disease patients also have a certain way to help. For example, seek help from relevant social organizations. <> >>>More
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There are many rare diseases, such as vampire disease, rubber disease, werewolf disease, immortality, and walking dead disease, these names sound ridiculous, but they are actually real diseases.