The boy suffering from a rare disease eating meat coma, the family for five years Kaihun (1)

jazzbet | 2018-06-20 | 0 | erwte

  Shangqiu a boy born 12 days was diagnosed with propionic acidemia, can not eat fish, meat and other high protein foods, otherwise you will vomit coma。In order to be envious fear of children, the family did not eat meat for five years。  It is those very low incidence of the disease。Rare disease known as "orphan" disease, there is no clear definition in China。
According to the definition of the World Health Organization (WHO), the prevalence of rare diseases as the number of the total population ‰ -1 ‰ disease。
The world according to the specific circumstances of their own country, there are some differences that standard rare diseases。
For example, the United States will be a rare disease is defined as the number of patients per year less than 20 million people (or incidence proportion of the population is less than 1/1500) disease; Japanese regulations, less than 50,000 as the number of patients (incidence or proportion of the population 1/2500 ) disease, the incidence of China Taiwan millionth the following places as a standard rare diseases。  Different time and place, the definition of standards vary。For example, AIDS was once designated as a rare disease。In another example, thalassemia, in the Nordic region has also been designated as a rare disease。
Now, the two diseases are common diseases。
  According to the US National Institutes of Health statistics, there are 6500 kinds of diseases were identified as。
For rare diseases, there is no official definition of authority in our country, because the Chinese incidence of rare diseases is not yet clear, but the foreign data is not necessarily suitable for China, which is currently China rare disease policy development difficulties and bottlenecks。  Persistent genital arousal disorder internationally recognized five or six thousands of products, accounting for about 10 percent of human diseases。This ratio, the total number of all types of rare diseases should have as many millions of people。
Currently, the definition of rare diseases in different countries vary, many countries and regions have set up relevant organizations, to develop special laws and regulations。
Disease defined the United States, Japan, respectively, the national prevalence of less than 200,000 and 50,000 for rare diseases; the United States developed a rare disease security law to protect the rights of patients with rare diseases。
  It refers to the low prevalence, a rare disease, but around the world are not the same definition of rare diseases。In the United States, all within the diseased。Diseases with fewer than 200,000 people, are all rare disease; in Japan the number of defined disease less than five million people who belong to rare diseases; and in Taiwan Province, with China as one ten thousandth of the annual prevalence of rare diseases prevalent standard rate of。American Organization for Rare Disorders published by the rare disease up to as much as one thousand kinds。
  Domestic more widely known rare disease comprising: phenylketonuria, thalassemia, not osteogenic disorders (commonly known as glass doll), hyperammonemia, organic acidemia, Wilson's disease。

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