Bangladeshi girl seeks help for rare excess hair condition

Bangladeshi patients Bithi Akhtar sits for a photograph as she waits in a ward at a hospital in Dhaka on May 12, 2016.
The 12-year-old suffers from Byars-Jurkiewicz syndrome and a complication known as hypertrichosis — dubbed “werewolf syndrome.”  AFP PHOTO / STR

DHAKA, Bangladesh — The family of a 12-year-old Bangladeshi girl who suffers from a rare condition that causes thick hair to cover her face and body have spoken out as they seek to fund surgery to give their daughter a chance at a normal life.

Bithi Akhtar suffers from Byars-Jurkiewicz syndrome and a complication known as hypertrichosis — dubbed “werewolf syndrome.”

“She has been covered with hair since she was born. We thought it would go away as she grew up,” Akhtar’s mother Beauty Begum said.

As a result of the syndrome, swollen gums cover Akhtar’s teeth, and her breasts make up almost half of her 38-kilo frame, leaving her unable to stand or attend school.

“We thought it was God’s wish she was born like this. But I no longer can see my kid bearing all the pain anymore,” her mother told AFP.

Only four or five people in the world are thought to have the same exact condition, the child’s doctor said.

“Byars-Jurkiewicz syndrome creates facio-genital disorder and massive bilateral enlargement of breasts after puberty, which has happened to the young girl,” said Fakhrul Alam, a doctor at Bangabandhu Sheikh Mujib Medical University.

Akhtar’s family are seeking to generate awareness of her plight in a bid to raise funds for treatment, with doctors saying her life could be vastly improved with surgery.

Doctors plan to carry out a breast reduction, reduce her swollen gums and give her hormone therapy to control her body hair.

“We are truly optimistic the kid will be returning to normal life after the entire procedure,” Alam said.

While the university treating Akhtar covers part of the cost of her treatment, her father, a motorbike taxi driver, said the family still cannot afford the rest.

“I had to spend more than 80,000 taka ($1,025) to buy medicines, a big chunk of which was a bank loan. And I don’t have anything left for her treatment,” Abdul Razzak said.

The girl’s parents drew inspiration from the case of a 26-year-old Bangladeshiman who received hundreds of offers of financial help as he sought surgery to remove huge bark-like warts from one hand.

Though she presently spends most of her time in hospital, Akhtar is optimistic for the future.

“I want to go back to school,” she told AFP. “When I grow up, I want to be a doctor.”