Brave sufferer of ‘horrible’ disease becomes ambassador
A GUGULETHU resident suffering from the condition fibrodysplasia ossificans progressive (FOP) says the rare disease had denied him his childhood, but due to his eagerness to learn about the condition, he is now the country’s FOP ambassador
Thozi Mciki, 50, was diagnosed at the age of seven in 1973 at Red Cross Children's War Memorial Hospital. He is one of 11 patients suffering from FOP in the country.
FOP is a rare genetic disorder which causes soft tissues to transform permanently into bone. The FOP patients’ average life expectancy is around 40, but some people live longer.
Muscle tissue and connective tissue such as tendons and ligaments are gradually replaced by bone (ossified), forming bone outside the skeleton (extra-skeletal or heterotopic bone) that constrains movement. There are 800 confirmed cases in the world.
Mciki said the disease prevented him from living a normal life. “I have never had the joy of playing as a child. FOP kept me trapped in my own body.” He said his condition also dashed his dream of studying for a Bachelor of Commerce degree at Unisa.
“I had to drop out in 1990 after just a few days as I could not stay on campus because I became a burden to other students, who always had to assist me when walking to the toilet, shops, libraries, and to and from the class,” he said.
However, his eagerness to learn more about his condition has earned him trips abroad and he is now the country’s FOP ambassador.
“I have been to conferences about the disease. What I have found out is that the locals still have a stigma compared to our European counterparts. Europeans understand this rare disease. Patients are cared for and provided with support, unlike here,” he said.
Mciki will again travel to the UK on May 29, where FOP experts and patients from around the world will discuss ways to find a prevention drug to help prolong the lifespan of FOP sufferers.
His sister, Nomaindia Mciki, has had to give up work to care for him.
SA FOP Association chairperson Professor Chris Scott said it was a “horrible” disease that shortens patients’ life expectancy.
“It starts to show in patients as young as four. They develop lumps on their backs which turn to bones. As the patient grows older, it becomes difficult to move their muscles as the body becomes stiff from neck to toe.
“Patients then die early from complications arising from not being able to breathe because of muscle constriction. This is indeed a horrible disease.”