District 18 News
Written by: Zeng Fengting
2019-12-27 00:00
Last updated: 2019-12-27 00:00At the age of 28, Le Min is engaged in her favorite painting career. Just as her life is on the right track, a sudden and rare disease is silently killed in front of her. Half a year ago, she never thought that she would gradually lose the vision of her left eye, and even her right eye, who had only vision, might follow the same fate. So far, Le Min has spent more than 100,000 yuan on treatment. She is currently receiving treatment at her own expense and needs to last for one to two years in order to exert her effects and keep her right eye. In order to cure the disease, she and her mother quit their jobs separately, relying on savings to survive, and the condition deteriorates rapidly. Make her family zero in an instant. She had asked the Care Fund for help in the past, but her application was not accepted because the medicine she applied for was not for cancer. The drug used by Lemin is not in the "safety net" and cannot accept government funding. To maintain the use of effective self-financed drugs, it can only rely on public fundraising from charities.
Le Min grew up in a single-parent family, and was dependent on her mother as a child. After graduating from college, she devoted herself to the education of children's drawing and practiced her ideals. Le Min, who has a strong interest in art since she was a child, loved the wild Western illustrations. When she first encountered gongbi painting in college, she fell in love with it as soon as possible. Before her eyes did not show disease, she often spent a lot of time painting. When Le Min talked about related art issues, she kept talking. She said with a smile, "I enjoy my creation very much, because it makes me feel very calm and comfortable. I will concentrate on painting and feel very cure."
Thirteen steroids were taken orally when the condition was most severe
However, in June, Le Min found that her left eye was red, and then she felt more pain. At first, she didn't take it for granted and thought it was just ordinary eye inflammation. Although she went to the emergency department for treatment immediately, the doctor only diagnosed it as Eye inflammation. Over time, she found that the condition of her left eye not only did not improve, but became more and more serious. When she felt that something was wrong, she turned to a private hospital for medical treatment. However, the doctor told her that she had a severe inflammation.
Day after day, Le Min's condition became severe, her left eye began to swell, her eyes were difficult to open and close, her eyes moved, and more secretions appeared. At the worst of her condition, she once needed thirteen steroids orally to keep her condition from worsening. "A normal person can only take one pill, but I was very sick at the time," she said, feeling down for that. In the end, the doctor told her that depression was one of the side effects of the drug, and she knew why.
Left eye swelling worsens rapidly, doctors say no cases have been encountered
In order to find out what the eye problem is, Le Min went to different places for medical treatment. In July and August, she underwent magnetic resonance imaging and positron scanning. She also performed eye, tonsil, and lung surgery pathology tests from August to September. Because the cause of Le Min's illness is unknown, the doctor can't prescribe the right medicine and can only try her best to relieve her condition.
After some frustration, the doctor finally found the cause of her illness in November and told her that there are two possibilities. One of them is the rare disease type IV immunoglobulin G-related disease (hereinafter referred to as IgG4) that she is currently diagnosed. Because IgG4 is an immune system disease discovered only in the 21st century, patients with IgG4 have a higher serum index than ordinary people, plus their different organs, including eyes, salivary glands, kidneys, lungs, pancreas, lymph nodes, meninges There are opportunities for morphological changes of the mass, aorta, etc. Even the hospital is unfamiliar with this disease, so far no cause has been found.
Le Min said that one of the doctors with more than 20 years of experience also said, "I have done this business for more than 20 years, and I have never encountered the same case as you." The doctor's statement made Le sensitive, because She didn't know what disease she was facing, nor did it know its source, but she was going to fight it for a long time.
The left eye is to be removed before the disease is beginning to be controlled
It has been nearly six months since the onset of diagnosis of IgG4. During this time, Le Min had made a major decision. After several examinations, a doctor suggested that Le Min remove his left eyeball for further examination. Le Min felt very helpless about this, she said frankly: "At that time, the doctor and I said that the left eye had lost vision and nerve damage. I understand that for him, this organ that has lost function is useless and not useful. Removal and inspection. But I can't accept it. "She thinks that even if the eyeball is removed, it does not mean that it can be tested, because she has tested different tissues, but still can't find the cause of the disease.
Soon after she was diagnosed with IgG4, the doctor prescribed a drug for IgG4 and found it effective for her condition. She then gave her an injection to speed up her treatment. She thought, "This is a certain risk. Generally, I don't overdo it, but because my condition is very urgent, I took 1,000 mg in three days." She promised that it was a very risky decision, but fortunately it helped her shrink her swollen eyes and let her see hope.
At the beginning of the illness, Le Min was very frustrated. Her beloved painting tools were forced to be placed on the corner of the desk, and the pen holder was more dusty. She confessed that she had not painted since the onset of June. Speaking of which, tears burst into her eyes for a long time. Le Min tried to pick up the brush after the onset, but she felt heavy and sad every time she picked it up. "Because when my left eye loses sight, the distance feels worse than before. It must be required, and now it is easy to get tired and feel uncomfortable. "
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According to the 2018 University of Hong Kong study, one out of every 67 people in Hong Kong has a rare disease, accounting for about 1.5% of Hong Kong's population. The government has provided financial assistance to patients in the past, and patients can apply for the Samaritan Fund and the Care Fund to reduce the burden. However, drugs for most rare cases are often not included.
So far, Le Min has spent more than 100,000 yuan on treatment. She is currently receiving treatment at her own expense. It will take one to two years for her medicine to work and to keep her right eye normal. However, neither she nor her mother can afford such a high cost of medicine. Since the onset, in addition to Le Min being forced to quit her job for treatment, her mother has also quit her job to take care of her. Instantly, her family's income was reset to zero, and she could only rely on her savings to survive. However, the rapid development of her illness also caused them to run out of savings. She had asked the Care Fund for help in the past, but her application was not accepted because the medicine she applied for was not for cancer. The drug used by Lemin is not in the "safety net" and cannot accept government funding. To maintain the use of effective self-financed drugs, it can only rely on public fundraising from charities.
Although Le Min's left eye vision is gone, she still hopes to pursue her favorite artistic career in the future. Le Min, looking at the painting next to him, said, "I hope to open a studio in the future. There is a place where I can concentrate on working with like-minded friends. I also want to go to different places and appreciate different styles of work."
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