However, the reality is cruel. In 2017, I was diagnosed with Pompe disease, a disease that affects the whole body muscles and multiple organs because of the accumulation of glycogen. It is a rare disease. Since the onset of the disease, I went to the hospital of county, city, province, capital, finally diagnosed. During this process, the whole family has suffered, facing the misdiagnosis of the doctor, the critically ill notice, making my whole family bleak. On the day when I was diagnosed with a rare disease, my family were heavily in debt. Soon after, my brother was also diagnosed with Pompe disease, and the whole family fell into sorrow. This is not the end, but it is the beginning of another challenge. I am weaker and weaker every day, I can’t run, can't breathe at night, even sleep with the ventilator. Can’t lift my legs, can’t climb the stairs...... but I do not give up hope for life, I want to be strong.
In order to let me control the complications, my parents still work hard to make money. I think I should work for my family and for my life. I quit the first-line clinic, and go to the triage, nobody knows what the daily work means for a person who may be exhausted at any time. My body is getting weaker and weaker. I know I have to use medicine to support my body and restore my health. Pompe is a rare medicine that can be treated in rare diseases. It need million dollars a year. I think society can not only see how expensive our drug prices, should also realize that I have social value, everyone is all equal.
China Pompe Care Center
China Pompe Care Center was established in July 2011 by Pompe patients and their families. It is a non-profit organization engaged in public welfare and non-profit social work. It is committed to providing service, assistance, emotional care for patients and their families, improving social awareness, promoting social understanding, and helping patients get the right to medical insurance and social services.
Website: http://pompe.org.cn/
E-mail: public@pompe. org. cn
