UARU
Surviving in Ukraine with an Extremely Rare Disease
13 March, 2017
470

“I was told that I wouldn’t live to see 18,” says Dmytro Kulesha, a man born with the rare mucopolysaccharidosis condition. In Ukraine, he is just one of two people born with this extremely rare genetic disease, which means his body is unable to output the mucopolysaccharide enzyme automatically.

Dima was born an ordinary baby. Things began to change when he began limping during Physical Education classes. A year-and-a-half later, he was diagnosed.

Since then, every Thursday, Dima goes to the hospital to receive treatment through intravenous from 9 a.m. until the early afternoon. The treatment costs the government 1 million dollars a year. It is not a cure, but it allows for him to live an ordinary life.

“The only difference is my height. Well, and my fingers are crooked. That’s all,” he says. “Nobody notices it in the street.”