Suffering from Rare Disease, This Chinese Girl Spent 11 Years of Her Life in the ICU Hospital

News24xx.com - A woman named Zheng Yuning, 31, was first hospitalized for respiratory failure in February 2009. After that, she decided to stay at the Qingyuan Traditional Chinese Medicine Hospital in Guangdong Province, China.

After two years being treated in the ICU by using assisted ventilation, he became the first patient in her city to be diagnosed with the disease Pompe.

This condition is officially known as type II glycogen storage disease, a disorder that damages muscle cells and nerves throughout the body.

This progressive muscle weakness or myopathy is caused by the accumulation of glycogen that results from a deficiency of the lysosomal enzyme known as the alpha-glucosidase enzyme.

As a result she is permanently connected to the respiratory machine. The worst part of Yuning's condition is that she has to be injected with an alpha-glucosidase enzyme at times. This enzyme is known as Myozyme. Because these drugs are very expensive, they are not covered by the Chinese health care system.

This drug was developed in the United States by a company now known as Sanofi Genzyme and is supported by the US Food and Drug Administration. The drug is the only prescription drug that is approved for its condition.
 
Because this drug was only available in 2007 and did not enter the Chinese market for a decade, Yuning's parents had to buy it through Hong Kong at a cost of 80,000 yuan (about 158 ??million) per treatment in 2012.

The Chinese food and medicine authority approved the drug in April 2017, with Yuning's father, Zheng Yang and mother Wen Meiguang in debt of 600,000 yuan (around IDR 1, 190 billion) for treatment, which began in late 2018 and lasted for 12 months.

Yuning Says: "My muscles are weakening year after year, so for the past 11 years I have remained alive with the help of a breathing machine. I can't cough up phlegm, so every day I spend all my energy cleaning my throat. ”

Because of her family's inability to inject drugs regularly, Yuning's physical condition has worsened. She stopped taking medication in November last year, and his condition has worsened since then.

Muscle degeneration has reduced his backbone to an S-shaped curve, while she has no power to perform basic tasks such as clearing her throat, which he now does with the help of her parents up to five times a day.

NEWS24XX.COM/CTR