15-year-old girl with rare disease stores her eggs in Shanghai

A 15-year-old girl with a rare disease has had 10 of her eggs preserved with the help of Shanghai doctors, to magnify her ability to have children in the future.

The girl from Shandong Province started to suffer symptoms including vomiting and diarrhea at the age of 2 months and was brought by her parents to Shanghai's Xinhua Hospital, after local doctors failed to detect the reason.

Xinhua doctors confirmed the issue was congenital adrenal hyperplasia, a genetic disorder that affect the adrenal glands. These glands produce hormones the body needs to function properly. An imbalance in the hormones can cause symptoms affecting sexual development.

The disease is only seen in one of every 12,200 newborns in China.

The girl suffers lipoid congenital adrenal hyperplasia, the most severe form of CAH, which can cause developmental problems and even death.

Since then, she has been under the treatment and monitoring of Xinhua Hospital.

The girl started her periods at 2 years old. However, her period became irregular and the mother took her to doctors for fear that the disease may have caused an early failure of her ovarian function.

Dr Wang Wenjuan from Xinhua's reproductive medicine center checked the girl's medical record and considered the necessity of fertility preservation. She applied for ethical evaluation and helped arrange a green channel for the girl, from whom 10 eggs were harvested.

"Apart from adults who want to keep their fertility in order to postpone their child delivery schedule, many people with serious diseases or those who face treatment that jeopardizes their fertility have more a desperate demand for fertility preservation," Wang said. "In China, there are over 20 million people with rare diseases, about 80 of which are genetic diseases and about 50 percent of patients start to develop symptoms in childhood. Fertility preservation is very meaningful for such patients."

Xinhua Hospital, as a leading medical facility in rare disease diagnosis and treatment, has established a whole life management and care on rare disease patients.

"Keeping their fertility is an important part of our medical service," Wang said. "I may have chance to help the girl to have her own children before my retirement."