Born With Severe Ichthyosis, Pan Xianhang Became Known as the “Fish Boy” of Wenling

From the day he was born, Pan Xianhang’s skin has been thick, dry, hardened, and layered with scales that led people to compare his appearance to a fish. In Wenling, in Zhejiang province in eastern China, he became known locally as the “Fish Boy.” Doctors identified at birth a severe form of ichthyosis, a rare inherited skin condition whose name comes from the ancient Greek word for fish, ichthys.

When his story drew wide attention in 2013, Pan was eight. Thick, itchy scales covered his whole body. The condition altered the shape of his eyelids, nose, mouth, and ears and limited how freely he could move his arms and legs. Because his skin cannot work the way typical skin does, he has trouble controlling his body temperature and often becomes overheated. He lives with ongoing pain and intense itching that make deep sleep extremely hard. Everyday things — playing with other children, going to school, or simply resting — become difficult.

Ichthyosis is a group of genetic disorders marked by dry, thickened, scaly skin. Milder types may involve only some areas of the body. Pan’s form is especially severe. Specialists estimate that more than 16,000 infants are born each year with some type of ichthyosis, though how serious it is differs greatly from child to child. There is no cure. Care aims to keep the skin as moist as possible with heavy creams, emollients, and oils so it is less likely to crack and become infected, and to use cooling measures such as cool water when he overheats or runs a fever. If broken skin is not carefully protected, secondary infection remains a serious risk.

Even with the physical strain and the stigma of the nickname “Fish Boy,” what Pan wanted most was simple: to study, to have a childhood like other children, and to live without constant pain and itching. His mother said publicly that she hoped doctors could do more to ease his symptoms so he could attend school without unbearable discomfort. In 2013, medical teams visited the family, offered treatment support, and the case received national attention and donations.

Pan Xianhang’s life shows how hard daily existence can be for people with rare genetic conditions. It also shows that even under extraordinary physical strain, the same hopes remain: school, play, rest, and an ordinary life.

Sources

• Korea Times / Imagine China coverage of Pan Xianhang (2013)
• New York Daily News, “Chinese ‘Fish Boy’ covered head to toe with itchy scales” (2013)
• HuffPost, “Pan Xianhang Suffers From Itchy Scale Skin Disease Ichthyosis” (2013)
• Foundation for Ichthyosis & Related Skin Types (FIRST) information on how common ichthyosis is and what it involves