Vietnamese boy gets treatment for severe pigment disorder

TN News

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Duong Van Luong (right) with his uncle at the Central Dermatology Hospital in Hanoi

Duong Van Luong hides behind his uncle every time a visitor comes close to his bed since he does not want to see another scared-looking face upon seeing his.

The nine-year-old from the northern mountain province of Bac Giang is at the National Dermatology Hospital in Hanoi for treatment for a pigment disorder, and his face is so covered in black tumors that it is hard to make out his eyes and nose, news website Dan Tri reported.

Luong was born with xeroderma pigmentosum, or XP, a genetic disorder of the DNA repair which impairs the body's ability to repair the damage caused by ultraviolet light.

The face and neck, areas most exposed to sunlight, have borne the brunt of the damage. He cannot open his eyes fully or breath through his nose.

But it is also hard for him to open his mouth to breath, smile, or cry since the corners are dry and bleed.

He scratches his itchy skin occasionally, causing it to bleed too.

Nguyen Thi Nhu Lan, head of the hospital's laser surgery department, said Luong is getting special attention from doctors.

They are examining him to see if he has skin cancer and will remove the tumors on his face to ease the pain.

She said the treatment would take a lot of time and effort, and requires support from the community.

His uncle Duong Van Tai, who stays with him at the hospital, said the boy had been taken to commune and district hospitals since he was very young, but his family was too poor to continue with the treatment.

Luong's father died years ago and he was with the boy on behalf of his late brother since his mother is mentally ill.

The boy was skinny since he would have nothing to eat when his mother Nguyen Thi Dinh had bouts of mental illness, he said.

"She does trivial jobs. Any little money she makes is spent on treatment for the boy. But every time it would be gone after just a couple days."

Gia Dinh va Xa Hoi (Family and Society) magazine quoted her as saying that Luong had the disorder since birth, but it only became severe three years ago.

"He had small tumors that burst. Then there would be pus and blood.

"He has never had a good night's sleep."

Without much money for modern treatment, she would try traditional treatments, sometimes making it worse. "Then I could only hug him and cry," she said.

The boy of the night, as children with the condition are usually called, does not have a normal childhood like his friends do.

He has to stay indoors all the time, not only to avoid sunlight but also the scared and curious stares of people, some of whom call him "devil face."

The boy is interested in the crowds and traffic in Hanoi, and tried to go out to have a look, but then decided to remain in the room as afraid of people's reactions, the uncle said.

Donations to help Duong Van Luong can be sent to his mother Nguyen Thi Dinh in Queo village, Phu Nhuan Commune, Luc Ngan District, Bac Giang.

Donors can also contact his uncle Duong Van Lai on his mobile phone at (+84) (0) 169 923 7150. Lai is with Luong at the Central Dermatology Hospital, 15A Phuong Mai Street, Dong Da District, Hanoi.

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