South African director/producer Odette Schwegler has produced a film which documents stories of people living with fibrodysplasia ossificans progressiva (FOP), one the rarest conditions in the world.
The film, Tin Soldier, premiered this week in Johannesburg.
In partnership with Jozi Film Festival, the event saw the coming together of families affected in one way or the other by a rare genetic condition called Fibrodysplasia Ossificans Progressiva (FOP) – a condition that makes body movement nearly impossible.
The Sunday Independent reports that there are only 15 reported cases South Africa and 900 known and documented worldwide of this progressive condition, which is caused by a single point mutation in a gene.
“There are potentially thousands of other people living with this condition and they don’t know what it is, and because it is so rare, often doctors don’t know what it is, causing misdiagnosis that can cause further deterioration and untimely death,” said Schwegler. The statistical expectation is that there should be upwards of 5 000 cases of FOP globally and between 700 to 800 patients in South Africa.Sunday Independent report (subscription needed)