Twin sisters transforming lives
Twin sisters with spinal muscular atrophy overcome challenges, pursue a passion for literature, and open a library to inspire others and advocate for rare disease awareness, Li Xinran reports.
Rare Disease Day is observed on the final day of February each year. According to the World Health Organization, rare diseases are conditions that affect between 0.065 percent to 0.1 percent of the population. Many of these diseases are congenital, chronic, and often life-threatening.
Zhao Wenjing and Zhao Yajing, both 27 years old, are twin sisters. They are patients with a rare disease known as spinal muscular atrophy, or SMA, which is a progressive autosomal recessive genetic disease. Patients typically experience muscle weakness and often develop scoliosis.
However, it wasn't until last year that the twins were officially diagnosed with SMA through genetic testing. Their previous diagnosis, in 2000, was said to be neuronal motor injury.