Syringomyelia, the Rare Disease That Led to Xia Shu’s Death

Local media reported that a famous Chinese romance novelist died at the young age of 29 after a three-year battle with a rare disease.

The Hong Kong South China Morning Post (SCMP) reported that Xia Shu, a writer famous for her serious and complex descriptions of emotions between men and women, had passed away on the 10th. Her most famous works include “I Won’t Love You” and “The Lenz’s Law”.

The disease Xia was diagnosed with was Syringomyelia. Syringomyelia is a disease that damages the spinal cord by gradually expanding the cerebrospinal or extracellular fluid-filled cyst in the spinal cord. When she first exhibited symptoms, she thought it was just a common cold due to a fever that lasted for several days. However, she was diagnosed with Syringomyelia two years later.

Patients with syringomyelia can experience pain, abnormal sensations, and sensory loss. If the autonomic nervous system is affected, abnormalities in body temperature, sweating, bowel and bladder dysfunction, and sexual dysfunction can occur. If the syringomyelia affects the medulla, symptoms such as tongue paralysis and atrophy, difficulty swallowing, speech disorders, facial sensory paralysis, and facial paralysis may occur.

Currently, there is no known cure.

According to media reports, Xia couldn’t properly consume food as eating worsened her condition. As a result, she lost 44 pounds in just a month.

Eventually, Xia decided to document her symptoms and experiences with Syringomyelia on Weibo. She wrote, “I vomit at least 15 times a day,” and “I have a strong fear of food, but I have to eat.”

By the time she received an accurate diagnosis, it was already too late due to two years of mistreatment. Her physical strength was too weak to undergo surgery, and she could only receive conservative treatment.

Xia warned, “This disease has been reported about 30 times worldwide. Stay away from unsanitary delivery food and incompetent doctors.”

As her condition worsened, it became increasingly difficult for Xia to keep her records.

When news of her battle with the disease became known, fans encouraged her with messages such as “Stay healthy” and “We will wait for your return,” but her Weibo posts ended in October of last year.

In February, Xia’s mother posted a statement that her daughter had passed away in January.