Trapped in own body and ‘frozen’
Few South Africans suffer from rare bone condition, FOP
‘ITALK to people about fibrodysplasia ossificans progressiva (FOP) and they are no longer afraid when they see me,” said Thozi Mciki, his thin arms clamped tightly to his body which has been warped to one side.
The 50-year-old FOP sufferer from Gugulethu takes us into a glimpse of the world inhabited by his body which is slowly but inextricably being frozen to a standstill.
The rare condition, of which there are only 14 known cases in South Africa, sees an over-stimulation of bone growth – in essence, a second skeleton – due to a defective gene which replaces damaged soft tissue with bone.
Mciki first started showing signs of FOP as a baby, but his condition was only properly diagnosed when he was seven.
He stopped walking unaided in 2008, resorting to a walking stick.
However, as FOP started taking an ever greater toll on his failing body, within three years the walking stick largely became futile.
Mciki’s upper body, from his neck down, is frozen and he is only able to move his hands, while his hips and legs are almost completely stiff.
A fund-raising organisation called the Blaahs Society helped secure a R120 000 motorised wheelchair which makes it easier for Mciki to move around. However, there are still obstacles.
“Although I have this wheelchair it is difficult to move around as you can see these houses are too small. It’s not safe for me to even walk to the toilet,” Mciki said.
The toilet that Mciki uses is located in an outside structure at the rear of the house – a distance of about 15 metres – which he has to negotiate using his stick and by leaning against the boundary wall, because the wheelchair cannot fit through the narrow passage leading out to the back door.
Often his sister, Gladys, who takes care of him, has to accompany him to the toilet.
His discomfort and potential for further physical injury is exacerbated when it rains.
“In 2014, on a Sunday morning, I went to the toilet and when I got to the doorway I stepped in a hole and fell.
“I was hospitalised for three weeks and couldn’t feel the one side of my face,” he said. He longs for a toilet in his room and a shower with low-set handrails.
“It would make life easier if my sister did not have to wash me in my room and I could just have a shower to stand in,” he said. Gladys had to leave her job as a domestic worker to become her brother’s permanent carer.
Despite the obvious hardships, Mciki remains positive and has not let FOP stop him from achieving things in life.
“I am here to encourage other FOP warriors to accept education. Just because you have FOP doesn’t mean you can’t be employed or get an education.
“There is always hope and young girls in school with this condition, they shouldn’t stay inside and be shy just because they are different to others.” Mciki said.
The Thozamile Mciki Trust Fund which came about with the assistance of the Blaahs Society was set up to assist FOP sufferers with their daily needs.
Although FOP is taxing on the body, fellow sufferer Damian Fredericks is an enthusiastic 18 year old from Kuils River who still plays soccer with his friends.
Damian was diagnosed with the condition in September 2009.
His father, Joseph Fredericks, said: “I noticed his toes when he was a baby and we went to a paediatrician who said it’s just a bunion and they would take care of it at a later stage. Back then doctors didn’t know what FOP was.”
However, he began to suspect something was seriously wrong when he was playing cricket with his sports-mad son one day.
“Damian and I played cricket and I noticed that he couldn’t bring his arm up further than his shoulder. I asked him ‘what’s wrong’ and he said ‘I can’t lift my arm up anymore’. I said ‘no’ because he could always do it,” Fredericks said.
Fredericks said he was self-employed but lost everything after spending so much time in hospital trying to figure out what was wrong with this son and eventually he and his family were forced to relocate from Durban to Cape Town, where they are shared a house.
The family said they hoped to have their own home soon as they would like Damian to have a room specially fitted to cater for his needs.
Damian’s neck, shoulders and arms are locked in place by FOP but the bottom half of his body is still unaffected.
Damian’s mother, Freda Fredericks said she remained positive as her son was handling having FOP well and was positive about his situation. Damian said the condition was hard at first but he didn’t let it get to him although he still longed to play like he used to.
“It was hard at first but I just took it one day at a time. He plays outside and when he is too rough and I tell him to take it easy, but he always tells me that if he stops now, FOP will get the better of him,” Freda Fredericks said. – African News Agency (ANA)