A Tianjin couple with rare autoimmune disorder lost their newborn baby. They're paralyzed, 200,000 yuan in debt, spend 15,000 yuan/month on treatment.
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A young Chinese couple who were both diagnosed with a rare autoimmune disorder a year after getting married have lost their newborn baby.
The couple in northern China’s Tianjin municipality were diagnosed with Bickerstaff brainstem encephalitis last year.
The husband, surnamed Li, said only four couples in the world had been diagnosed with the disorder at the same time, and they were the first case in China.
Li, 32, had a fever last March, a year after he married his wife. He also felt generally weak, his vision was blurry and his limbs were numb.
He was misdiagnosed as having a stroke at a hospital, and received the wrong treatment. When he received the correct diagnosis, it was too late and he was left paralysed.
Two months after Li’s diagnosis, his wife, Zhao, who was six months pregnant, also developed the same symptoms.
Still hoping the baby would be fine, she still delivered him prematurely soon after the diagnosis, but the newborn died shortly after birth.
Li said they did not know what caused their illness.
A Chinese neurologist surnamed Jiao told the media outlet Yangtze Evening News that the Bickerstaff disorder is extremely rare in China, with only 100 diagnoses a year.
Jiao said their living environment could be the reason, for example they might have not washed their hands thoroughly after touching hamsters’ faeces, or eating undercooked chicken.
Such factors may cause bacterial infections, which in rare cases could cause a person’s immune system to mistakenly attack their brainstem, which contains cells that possess similar antigenic properties to the bacteria.
Li said they did keep a hamster in 2024. They also loved eating seafood, which Li suspected might have contained dangerous heavy metals.
While patients with Bickerstaff brainstem encephalitis usually have a good prognosis, Li said in their cases, it might take them years to recover and they might be disabled for life.
Currently, they are recovering from paralysis. Li’s mother is looking after both of them.
Li used to work as a salesperson, and Zhao a customer service staff member. They are 200,000 yuan (US$30,000) in debt and spend 15,000 yuan a month on treatment.
Li began posting their videos on social media in February and tried to earn some money selling items online.
He can speak very slowly now, but Zhao still cannot speak. Li said he would speak for her and she would smile knowing that he understands her.
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Editor: Crystal H
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