Anne Zhang

    zhangy49@gmail.com

    A 13-YEAR-OLD boy from Guangdong Province who suffered from rare symptoms of a not uncommon disease was rescued by doctors at the University of Hong Kong (HKU) Shenzhen Hospital.

    The boy, surnamed Luo, was diagnosed with Epstein-Barr virus-related hemophagocytic lymphohistiocytosis (EBV-HLH), a life-threatening disease of hyperinflammation, but he showed some atypical symptoms, such as chronic diarrhea and gastrointestinal bleeding, doctors said.

    He is the second person in the world who was found to have these unusual symptoms of the disease, according to the hospital. The first person with the same disease was found in Germany and passed away in April.

    Luo started suffering from chronic diarrhea in January. After he had his appendix removed in March, his condition worsened, with constant fever and diarrhea. He suffered from severe malnutrition, dehydration and weight loss, and was transferred to HKU Shenzhen Hospital in April.

    Liu Guanghong with the hospital’s pediatrics department recalled that the boy weighed only about 20 kilograms and couldn’t eat anything upon entering the hospital.

    Luo was transferred to the Intensive Care Unit (ICU) for treatment in April, where his condition worsened.

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    He was given daily blood transfusions that were equivalent in scale to all the blood in his body, the hospital said.

    More than ten medical experts had consultations on Luo’s case and decided to remove his colon, which finally stopped his gastrointestinal bleeding and pulled him away from death.

    A medical team led by Yuan Guoyong with Chinese Academy of Engineering perfomed numerous tests and consultations, eventually confirming that Luo was striken with EBV-HLH.

    The disease is not rare among children, but Luo’s symptoms are unusual, Yuan said, adding that Luo’s condition is now stable and he has gained some weight.

    Doctors said Luo was probably born with genetic defects, which might be the original cause of the disease. The hospital is arranging gene tests for Luo and his family. If genetic defects are found in Luo, he has to receive a bone marrow transplant, doctors said.

    However, the family owes 170,000 medical fees to the hospital and won’t be able to afford the ensuing treatment, Luo’s aunt Peng Hongyan said.

    Peng said Luo’s parents both have disabilities and she hopes that the community will help the boy.