Teen becomes first ever cured of extremely rare syndrome
By Ryan General
11 days ago
A teenager has become the first person in the world to be cured of a rare genetic disease affecting just 21 known individuals globally.
Key points:
- Kai Xue, a 13-year-old girl from Bradford, England, suffered from WILD syndrome, a disease that causes severe swelling.
- She also had a life-threatening condition called chylous ascites, which caused a massive buildup of lymphatic fluid in her abdomen.
- After unsuccessful treatments for over a decade, Kai was referred to Royal Stoke University Hospital in Stoke-on-Trent.
- A team of specialists conducted a pioneering surgery that successfully repaired a leak in her liver and cured her disease.
About the disease:
- WILD syndrome is a genetic condition with symptoms including warts, immune problems, swelling and genital abnormalities.
The details:
- Born with an abnormal lymphatic system, Kai’s left arm became very swollen as a child. Kai and her mother Ning Chen spent years visiting various hospitals but faced only misdiagnosis and fruitless treatments.
- Dr. Mona Mossad, a specialist in lymphatic intervention, pinpointed the previously undetected leak as the root of the problem. The leak caused severe fluid buildup and the loss of vital nutrients, complicating treatment.
- Dr. Mossad’s team conducted a groundbreaking procedure to block tiny leaking vessels in Kai’s liver. They used specialized needles and surgical glue to repair the leak.
- After spending five weeks recovering in the hospital, Kai was discharged on February 9.
- “I’m so happy for the excellent care, and everybody was so nice and helpful and they tried their best to help us,” Chen was quoted saying. “The whole team is amazing.”
- Dr. Yvonne Slater, a pediatric gastroenterologist, was also involved in Kai’s care and expressed joy at her recovery.
What’s next:
- Kai’s successful treatment could pave the way for helping others with similar rare lymphatic conditions.
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