Poverty-stricken family with 'werewolf syndrome' receive free laser treatment

PHOTO: Poverty-stricken family with 'werewolf syndrome' receive free laser treatment

Devi Budhathoki and three of her children, Manjura, Mandira, and Niraj all suffer from Congenital Hypertrichosis Lanuginosa, a very rare disease that causes excessive body hair growth.

It is sometimes referred to as "werewolf syndrome". As a result of this condition, Devi and her children have thick, black hair covering parts of their bodies that hair would not normally grow.

The 65-year-old husband, who does not suffer from werewolf syndrome, told a Reuters photographer that he does not mind his wife's excessive facial hair. "A good man does not pursue a woman for her appearance," he said.

Too poor for treatment, they spent most of their lives enduring the stares and unkind comments brought on by their appearance.

"More than myself, I'm worried about my children. They are mocked by their classmates," The Daily Mail quoted Ms Budhathoki as saying.

Now they have been offered some respite as a local Nepal hospital has offered them free laser treatment. While there is no medical solution available for Devi and her children's condition, the laser hair removal is expected to help lessen their symptoms.

The couple have five children, three of whom suffer from Devi’s condition. 38-year-old Devi revealed to the photographer who documented their story that no one in her family had this disorder before her.

The Nepalese hospital has been treating Devi and her children for free since its management heard from locals, the media and social workers that Devi comes from a poor family.

Devi is married to Nara Bahadur Budhathoki and for 23 years they have been living in their home that has one kitchen, a shared bedroom and no lavatory. The house sits on a hill in Kharay, some 190km from Nepal's capital Kathmandu.

The family earns some money by working as porters. The cash they earn is used to pay their children's school fees. As for their meals, they eat what they can grow in their fields.

Dermatologist Dr Dharmendra Karn has been administering treatment Devi, along with her two daughters Manjura, who is 14, Mandira, who is 7, and her son Niraj, who is 12.

Dr Karn's care has helped the family, but they need multiple sessions for it to be effective and even after finishing a course of hair removal, they need to keep returning because the hair grows back again.

Reuters photographer Navesh Chitraker spent time with the Budhathoki family in September and documented their laser hair removal procedures.

"I spent three nights with Devi and her family in their home as I worked on this story. They live a typical life for people in a small Nepalese village, with no television or any other form of modern entertainment. There were no internet connection and whenever I had to make a phone call I needed to go somewhere high to find signal for my mobile.

"Their village only has one small school and a health clinic with no proper medical equipment. It takes a three-hour hike uphill to reach the village; the road there is often closed by landslides. How can a person like Devi think of medical treatment, when normal, day-to-day living is already so hard?" he said.

Despair

Despair

While Devi does not have to bear the burden of the medical fees to treat the condition, she has so little money that even gathering enough funds to pay for transport to get to the hospital is an uphill task.

She cries when she is alone, thinking of her poverty and her children.

Desperate, she has considered selling the only gold earring that she owns so that she can afford to travel to the hospital.

Sometimes she even thinks of not going back because the treatment doesn’t seem to be working, and the hair on her face always grows again.

"Spending time with her, I saw a mother who is fighting against all odds just to get a better future for her children," he said of the incredible eye-opening experience.

View his photo essay of the family's battle against a uncurable medical condition: