A 7-year-old girl suffers from a rare disease among rare diseases, and her body develops purulent pus, requiring life-long treatment

The girl from Yunnan, who is only 7 years old, has gone through 7 years of seeking medical treatment. In addition to relying on traditional Chinese medicine to maintain stability for three years, the rest of the time is either on the way to seek medical treatment, or in In the hospital, and even the ICU, she has been in twice. Her main symptom is that wherever there is flesh on the body, as long as there is any injury, there is a possibility of suppuration, and it is the kind that penetrates deep into the bone marrow. Skull, doctors are afraid that the treatment will affect the brain and even recommend removing the skull.

The girl’s name is Xinxin. After 6 years of running around, she was finally diagnosed with Septic Aseptic Arthritis-Pyoderma gangrenosum-Acne (PAPA) at the Children’s Hospital of Chongqing Medical University. Syndrome, this disease is caused by gene mutation. The symptoms are mainly early-onset, destructive and recurrent inflammation of joints, skin and muscles. It is easily induced by trauma and requires lifelong treatment. Children cannot develop like normal children. Xinxin is 7 years old, and is not as tall as her 4-year-old sister. It is unclear what caused Xinxin’s genetic mutation. Her mother had herpes zoster when she was pregnant, but experts said there was no correlation. Although she spent a lot of money on seeing a doctor, her mother never gave up. Fortunately, she met many good doctors in the process of seeking medical treatment and gave Xinxin a lot of medical expenses. Her mother is also very economical, and often Xinxin treats her in the hospital. Mom was pitching a tent outside the hospital to treat her illness.

There are only more than 100 cases of this rare disease that Xinxin suffers from in the world. Because it is extremely rare, it is often misdiagnosed and treatment is delayed. Many rare disease patients are like lonely people who can only face one person. For the sick, although rare diseases have changed their lives, they still live and heal strongly. Please give them more care.