Nguyen Hoang Gia Bao, 18, at Cho Ray Hospital. Bao, the first recorded victim of Vohwinkel syndrome in Vietnam, lost all his fingers and toes to the rare disease. Photo by Ha Minh
A young man in Ho Chi Minh City is Vietnam’s first recorded victim of Vohwinkel syndrome, a rare disease that ate away his fingers and toes.
Nguyen Hoang Gia Bao, 18, from Thu Duc District, also has starfish-shaped patches of thickened skin on his arms and legs, as well as thick, honeycomb-like calluses on the palms of his hands and the soles of his feet.
Bao was transferred from HCMC Hospital of Dermatology and Venereology to Cho Ray Hospital’s Hematology Department on August 13 for treatment of anemia and thrombocytopenia (a decrease of platelets in blood).
T.T.L.H., 55, Bao’s aunt, said he started developing calluses before he was two months old, and was brought to different hospitals for treatment but doctors failed to identify his disease.
She said his fingers and toes became constricted by annular bands, his knuckles gradually deteriorating until they were gone by the time he was 10. Since then, he has not been able to receive further treatment because his family is poor.
About one month ago, when Bao’s left leg swelled, his family brought him to the HCMC Hospital of Dermatology and Venereology.
According to H., no one else in Bao’s family has contracted Vohwinkel, and his living environment is normal.
Doctor Suzanne Thanh Thanh, deputy head of Cho Ray Hospital’s Hematology Department, said Bao’s condition was identified 15 days after he had been admitted to the hospital, with the assistance of Hoang Van Minh, a dermatology and venereology expert.
Minh, a doctor at HCMC Medicine and Pharmacy University Hospital, said Vohwinkel syndrome is caused by genetic mutation and those who have it start manifesting symptoms during infancy or early in childhood. However, the cause of mutation is unknown, he said.
He said it is not caused by one’s surrounding environment or water.
According to Minh, the syndrome was first discovered in 1929 by the doctor after whom it was named and only around 50 people have been confirmed to have contracted it worldwide. The syndrome has two types, one of which includes hearing loss.
He said a surgery can be carried out to remove the constricting bands if the patient’s fingers and toes are intact. If not, doctors can only give the patients medicine to prevent complications.
Thanh and Minh said Bao is now being treated with acitretin to reduce the itching and peeling of the outer skin, as well as reduce the thickness of the calluses and stop the swelling.
Bao told Dan Tri Friday that he felt less itchy and that his calluses had considerably been reduced after just two days on the medication.