Living With a Rare Disability in Ukraine

07 January 2018 20:08

Since birth, Svitlana Patra has suffered from a rare genetic condition called Osteogenesis imperfecta or brittle bone disease. She has experienced more than 300 fractures in her lifetime. Hromadske traveled to the village of Podillya, 80 km south—west of Kyiv, where Patra lives with her mother and two cats, to learn more about her life.

At 35, Svitlana Patra has experienced over 300 fractured bones in her body.

“My childhood was overshadowed by my fractures…I was born with more than a hundred fractures,” she says. “And I can’t even count how many of them there were in my lifetime.”

Since birth, Patra has suffered from a rare genetic condition called Osteogenesis imperfecta or brittle bone disease. She can’t drink coffee or even strong tea because caffeine washes calcium away from bones. Occasionally, she even wakes up from suffering a fracture in her sleep.

But that does not stop her from living an active life. Patra is a journalist at the “Ukraine” University image center. She says she only needs internet and stable health to be able to work.

Photo credit: Oleksandr Popenko/HROMADSKE

Hromadske traveled to the village of Podillya, 80 km south-west of Kyiv, where Patra lives with her mother and two cats, to learn more about her life.