Living with “werewolf syndrome”
Dolkha District, Nepal
By Navesh Chitrakar
People have always had a certain fascination with the unknown – a fascination that has been experienced by Devi Budhathoki and three of her children, who all suffer from a rare genetic condition that causes large amounts of thick hair to grow on their bodies.
There is no medical solution available for Devi’s condition, which is known as Congenital Hypertrichosis Lanuginosa, but its symptoms can be reduced by laser hair removal. Dermatologist Dr. Dharmendra Karn has been giving this treatment to 38-year-old 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.
The Dhulikhel hospital has been treating Devi and her children for free since its management heard from locals, the media and social workers that Devi came 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 (118 miles) from Nepal’s capital Kathmandu.
Nara Bahadur does not mind Devi having excessive hair on her face; he said a good man does not pursue a woman for her appearance. The couple has five children, three of whom suffer from Devi’s condition. Devi told me that no one in her family had this disorder before her. She said that her family earns some money by working as porters. They use this cash to pay the school fees for their children. They eat what they can grow in their fields.
It’s generous of the hospital to provide Devi and her children with free treatment she said but she has so little money that she finds it difficult to pay for transport to get there. She cries when she is alone, thinking of her poverty and her children. She is considering 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.
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?
Spending time with her, I saw a mother who is fighting against all odds just to get a better future for her children.