What kind of experience is it to get a rare disease?

The experience of getting a rare disease: financial burden, disease shame, child rearing, social integration, small probability of gene mutation, a family is pushed to the center of the storm.

Individual families simply cannot afford it. They are not poor households, but they will soon become poor households and become poor due to illness.

Retinitis pigmentosa There is no corner, only the middle part of the field of vision can be seen clearly, which is called tubular field of vision in medicine. You cover your eyes with two rolls of paper, and your field of vision is roughly the world I see.

Extended data:

Because the incidence of rare diseases is very low, the research resources they can get are very limited. Based on economic interests, some pharmaceutical companies are not interested in the research and development, manufacturing or introduction of rare disease drugs and foods. In addition, there are few cases of many diseases, which makes it very difficult to study these diseases. Even if the symptomatic drugs are developed, because the patient market is relatively small, the price is surprisingly high, which is by no means affordable for patients.

These rare diseases are not contagious, so we don't need to stay away from them. In many countries and regions, even some developing countries, there are laws related to rare diseases promulgated by the state, which guarantee patients' treatment, assistance and normal life through mandatory provisions on drug production, medical insurance, social insurance and personal rights and interests.