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Ciské, 22, lives with Fibrodysplasia Ossificans Progressiva (FOP), a rare disorder in which muscle tissue and connective tissue such as tendons and ligaments are gradually replaced by bone (ossified), forming bone outside the skeleton (extra-skeletal bone) that restrains movement.
It’s estimated that FOP affects about 3,300 people worldwide, or approximately one in two million people. Although FOP is not fatal, most die young, starving to death after their jaws freeze shut or suffocating when new bone develops, making it impossible to breathe.
Ciské, who was diagnosed with FOP in 2011, at the age of 15years old, spends every six weeks in the hospital for a week at a time. Her pain flairs up so badly and the medication she takes affects her Type 1, trauma induced diabetes, which she developed when she was diagnosed with FOP.
“I’ve been in the hospital 60 times in the last seven years, when you are in hospital you see many people who are far worse off than you are. I hate it when people pity me, I was normal before this, I was Ciské then and I’m still Ciské, it’s just that my body is failing me, severely failing me. “
Ciské, who is determined to live life to the fullest, was nominated to lead the FOP awareness and support group in South Africa and along with 11 others from the group, is raising funds to attend a conference in Brazil this August.
In addition to now concentrating on her BA Human Resources, in hopes of pursuing a qualification in Industrial Psychology, Ciské also writes poetry to express herself and gives motivational talks to encourage others.
“I came to study here because, it has the best disability unit and they go the extra mile for their students. I also have a great friendship circle which forms part of my wonderful family support system and helps with living away from home,” said Ciské, who moved away from her family in East London, to study at Nelson Mandela University.
23 April is FOP Awareness Day and people are encouraged to wear green or blue in support.