Johannesburg - In the middle of the country’s battle to fight the Covid-19 pandemic, those who tested positive for Covid-19 were not the only group of people adjusting to isolating themselves. Isolation has become a norm for those living with fibrodysplasia ossificans progressiva (FOP).
FOP is one of the rarest genetic conditions which slowly turns muscle, ligaments, and tissue into bone, resulting in a second skeleton. Ultimately, this makes simple tasks such as walking, sitting, reaching and moving difficult.
According to Odette Schwegler, global director at Tin Soldiers, an NGO, FOP affects all demographic groups and there are 900 known cases of FOP globally. Malformation of the big toes is clear from birth.
“Statistics indicate there may be around 7 000 undiagnosed or unconnected people living with FOP. That’s a lot of people. In Africa alone, there should be about 1 200 people diagnosed with FOP. We only know of 35. Our mission is to find the missing ones,” she said.
Schwegler said the term “Tin Soldiers” was derived from a comment by a FOP mother who was describing to her son what was happening to him. The mother told the son he was the bravest of the brave, living in a body locked and stiff, with a mind as sharp as a sword, comparing him to a tin soldier.
Initially, the role of Tin Soldiers is to identify people who are living in isolation with FOP and connect them to care.
Schwegler highlighted that many do not know the name of the disease and live in isolation with the stigma and the pain of coping with a rarity that often leaves them feeling out-of-touch with the world.
“We can only imagine how terrifying it must be when you have no way of understanding the extreme things that are happening to your body. Despite looking for a needle in a haystack, somehow the team has beaten all odds and in the first five months of this year alone, has identified eight – mostly children – with rare bone diseases. Five of these are FOP patients,” Schwegler said.
In the Free State, a father and son were among the first to be identified within the province’s small rural farming community. KwaZulu-Natal followed with a 9-year-old boy who was diagnosed at Inkosi Albert Luthuli Central Hospital. A child from Mahikeng, North West, was diagnosed by a doctor at Chris Hani Baragwanath Academic Hospital. A second diagnosis of FOP was declared in Kenya.
The organisation has launched a “Raise-a-leg” challenge on social media platforms to search for patients suffering from FOP on a global scale.
Schwegler has recently produced a public service announcement advert to invite the public to help in the search.
“We’ve also recently returned from a ‘home visit’ with global-local FOP expert, Dr Christiaan Scott, to meet newfound FOP family members in person.
“There is nothing like the human element of this touching story to galvanise our nation and continent to keep up the search.
“Hope lies in the fact that FOP can be easily diagnosed if someone knows what to look for,” Schwegler said.
The Star