"IDO not want to live such a miserable life. Although I am sorry to my parents, I would rather die than live in this agoniy of pain!" said Lee Min-jung (an alias); a 13-year-old girl, who has been in pain from a rare disease called "Epidermolysis Bullosa" for five years. These days, patients with rare diseases are increasing massively. In addition, unclarified reasons for these diseases and lack of support give the patients more pain. Depressed about the unknown reasons for their disease, these patients lament on their mental and physical pain.
What is a rare disease? Nobody can exactly define the meaning of rare disease. According to the doctors who have studied about rare diseases, they are the diseases for which reason has not been clarified, so these are difficult to cure. Rare diseases are made up of various kinds of unfamiliar diseases, and there are more than 500,000 patients who suffer from rare diseases in Korea. The concept of rare disease was introduced in Korea four or five years ago. About 100 different kinds of rare diseases are known, and each disease has less than 20,000 inflicted patients. Recently the new sorts of rare diseases are being found with the development of medical science, so the kinds of rare diseases are increasing more and more.
Rare diseases give deep pain to not only patients themselves, but also their families. Choi Gyu-yeun (an alias), a five-year-old girl, has been suffering from a disease called, "Nerve Fiber Tumor" from the moment she was born. It is an incurable disease which one out of 3,500 people get. 70% of the patients do not even know that they have that kind of disease. She cannot stand upright and walk alone. However, what makes her case worse is that she needs to have continuous treatment, because she is still growing. Choi has had an operation, and her family cannot help but to keep watching her heartbreakingly. "I cannot help my daughter as a mother. I always feel oppressed in my chest," said her mother.
Rare disease patient suffers physically and mentally. Lee Min-jung (an alias) suffers from a disease which damages the skin and forms blisters, even as a result of trifle traumatic injury. It is called "Epidermolysis Bullosa.." Owing to sticky skin, this disease's victims feel pain whenever taking off clothes. What is more, she feels alienated from the society around her. "My school mates used to leave me alone. They said my disease is contagious so they might get my disease," cried Lee. Chung Sung-cheol (Dr., Seoul Asan Medical Center) said, "Lee's disease differs from virus or bacterial disease. It is a hereditary disease. It is not contagious to others. It is true that the rumors about the rare diseases are mostly groundless, and ignorance tends to make misunderstanding."
People who have rare disease also suffer from economic problems. Chung Hyoung-ryul (an alias), who got a rare disease named "Hyper IgM Syndrome", died a month ago. His mother said, "a medicine for the Hyper IgM Syndrome is too expensive. It is four times more expensive than the cheaper medicines. So, we had to change medicine to a cheaper one. Shortly after changing them, my son died." The medicines for the rare diseases are too expensive. What is worse is that the medical insurance does not cover this kind of medicine.
Many organizations were formed to solve the patients' difficulties. Among them, especially, the KORD (Korean Organization for Rare Diseases) has participated in many activities. "The most serious problem is that the system of health insurance mostly covers the slight illnesses like flu. Most patients of rare diseases cannot be compensated by their insurance. We make fund-raising campaigns and plan to hold a bazaar or concert to solve financial problems," said Shin Hyun-min, president of KORD. Other than that, they also make presentations on rare diseases and also publish books in order to reduce the prejudice against people with the rare diseases.
We all have recessive factors that could possibly lead to a rare disease. Those who are suffering from rare diseases are the unfortunate ones among us. The important thing is to reduce the prejudice on rare diseases and to take care of the patients with warm sympathy. A society where the majority respect and care for the minority would be the ideal society that everyone dreams of.Rare but Common People