"After 8 years, I finally waited for the diagnosis (result)." On February 28, Xiaoxue (pseudonym) published a hospital-issued disease diagnosis certificate on Weibo, and after diagnosis, she was diagnosed with idiopathic osteolysis, a rare disease.
Xiaoxue was diagnosed with idiopathic osteolysis, a rare disease. Courtesy of respondents
In the past nearly 8 years, the inexplicable "disappearance" of the right thigh bone has been torturing Xiaoxue. In 2014, when she was in her third year of junior high school, she accidentally injured her right thigh and underwent steel plate fixation surgery, and when she reviewed it, she found that the bone with the wound was shortening. Since then, she has sought medical treatment several times and undergone 2 bone graft surgeries, but the bone in her right thigh continues to shorten, and the bone implanted up to 23 centimeters has also "disappeared".
Xiaoxue sent out a plea for help on Weibo.
Because the cause has not been found, some doctors have recommended that Xiaoxue amputate. On February 7 this year, Xiaoxue began to ask for help through Weibo, hoping to get help from experienced doctors. After the help information spread on the network platform, Professor Shen Jingnan and Xiao Xue of the Department of Orthopedic Oncology of the First Affiliated Hospital of Sun Yat-sen University got in touch. On February 25, Xiaoxue, accompanied by her father, went to the hospital for treatment and was diagnosed with idiopathic osteolysis.
On February 28, Xiaoxue's mother, Ms. Chen, told the surging news (www.thepaper.cn) that next, Xiaoxue will follow the doctor's recommendation and treat it weekly by injecting disumab and zoledronic acid to promote bone growth. A re-examination is performed after one month, after which bone replacement is considered.
For now, medication and treatment costs still plague the family. Ms. Chen said that Xiaoxue had injected the first dose of disolemumab in Guangzhou on the morning of the 28th, and would return to her home in Handan, Hebei Province. However, she consulted in the past few days and found that the local hospital in Handan may not be able to provide the two drugs of disumab and zoledronic acid, and may have to be injected in the provincial capital Shijiazhuang or Beijing in the future.
Xiaoxue had a bone graft in 2017, implanting a 23-centimeter bone. Right: A 2022 review found that the bones were absorbed. Courtesy of respondents
On the other hand, xiaoxue's treatment costs have cost at least half a million yuan. Ms. Chen said that in order to take care of her children, she could not leave the house and sold alcohol to supplement the family. Xiaoxue needs 1680 yuan to inject a shot of disolemab, and will undergo surgery in the future, and the cost of follow-up treatment is still a problem, and they want to seek help from the Women's Federation and other aspects.
According to public information, idiopathic osteolysis is also known as ghost bone, disappearing bone, bone loss syndrome and Gorham syndrome, bulk osteolysis.
According to the Journal of Medical Imaging, Vol. 20, Vol. 20, Issue 5, this is a rare disease, osteolysis can occur in any bone, mostly single- or multiple, the latter is easy to invade the joint and affect adjacent bones, usually not taken seriously by patients in the early stage, and by x-ray examination, there has been a large amount of bone loss and often combined with pathological fractures.