Teen becomes first ever cured of extremely rare syndrome

Teen becomes first ever cured of extremely rare syndromeTeen becomes first ever cured of extremely rare syndrome
via Staffordshire Children’s Hospital at Royal Stoke
Ryan General
26 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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