China News Service, Hangzhou, May 6th (Qian Chenfei) May 6th is International Osteogenesis Imperfecta Day.

On the same day, the launching ceremony of the 2021 International Osteogenesis Imperfecta Day and the first Rare Bone Disease Awareness Month was held at the Second Affiliated Hospital of Zhejiang University School of Medicine (Zhejiang University Second Hospital) in Hangzhou.

During the event, patients and their families told their stories, hoping that "uncommon love" could be passed on to more people.

　　Osteogenesis imperfecta is a rare hereditary bone disease. The patient is also called "Porcelain Doll". It often develops from an early age, and can have multiple fractures under repeated mild external forces.

　　The 24-year-old Xiaoxin (pseudonym) is studying at a university in Shenyang. He is a "porcelain doll".

Because of osteogenesis imperfecta, "walking around" became his wish.

　　"My biggest wish is to be able to walk around, my mother is from Guizhou, but I have never been since I was young because of illness, and I especially want to go home with her." Xiaoxin said.

　　According to his father Chen Cen (pseudonym), Xiaoxin was not abnormal when he was born, and his legs became deformed when he was three years old.

“We took him to seek medical treatment everywhere. In the three or four years, we almost spent all the savings in the family, and Xiaoxin’s condition did not improve." Chen Cen said, Xiaoxin’s deformity in both feet gradually worsened and walked away. Squat down to rest soon.

　　In May 2015, Xiaoxin fractured his right femur in an accident.

The family went to the Orthopedics Department of the Second Hospital of Zhejiang University and Xiaoxin was diagnosed with osteogenesis imperfecta.

　　"At that time, I told Xiaoxin and his family that his leg needed osteotomy and orthopedic internal fixation, and he couldn't stand up immediately after the operation. He needed to sit in a wheelchair for a long time, and he could walk after the calf was also corrected." Department of Orthopedics, Second Hospital of Zhejiang University Chief physician Li Hang recalled that his team operated on Xiaoxin's right thigh and corrected the deformity of his left thigh.

After the operation, Xiaoxin recovered well and can perform rehabilitation training in a wheelchair.

One year after the operation, Xiaoxin stood up again with the help of crutches and returned to campus life.

　　In 2018, Xiaoxin received the university admission notice. The family was immersed in the joy that Xiaoxin was about to go to university, and the bad news came again-on July 29 of that year, Xiaoxin fractured his tibia.

　　"At the time, the plan given by the local hospital doctor was to cut off the deformed tibia and fix it with a ring stent. But we thought of using internal fixation in 2015 and the recovery was very good, so we did it the next day. Come to Hangzhou." Chen Cen said.

　　After related inspections, Li Hang decided to perform orthopedic internal fixation of the right tibia for Xiaoxin.

Medical staff from the Second Hospital of Zhejiang University also donated money and initiated online fundraising to ensure the second operation.

　　Thanks to everyone's efforts, Xiaoxin, who is now recovering well, is studying in Shenyang alone and can basically take care of himself.

"Efforts to prepare for the postgraduate exam, to go to more places to see" has become his goal at this stage.

Xiaoxin said, "I plan to receive the next stage of treatment this summer. I believe that the day when I can walk normally without crutches will come."

　　Ye Zhaoming, director of the Department of Orthopedics of the Second Hospital of Zhejiang University, said: “At present, there is no medical method to cure osteogenesis imperfecta at home and abroad. Only interventions such as drugs, surgery, and rehabilitation can restore the basic functions of patients as much as possible. This month is the first rare event. In the Month of Bone Disease Concern, we will carry out a free orthopedic clinic for rare diseases to popularize the knowledge of osteogenesis imperfecta to the public, let more people understand osteogenesis imperfecta, and do our best to help patients and their families."

　　“Patients with osteogenesis imperfecta are also called'porcelain dolls'. Behind the seemingly'beautiful' name are families with rare diseases with a heavy burden." Wu Zhiying, deputy dean of the Second Hospital of Zhejiang University, has been deeply involved in the treatment of rare diseases for more than 30 years. She said: “In China, there are about 20 million patients with rare diseases, most of whom are children. As doctors, patients and their families around the world have different levels of awareness of rare diseases, the diagnosis process is difficult and the treatment costs are expensive. Bearing the misunderstanding and prejudice from the public. We need to pay more attention to, pay attention to, and care for patients with rare diseases, so that love is not rare." (End)