Hi! I am Mandilené Hoffmann … a 14-year-old young lady from Pretoria and currently classified as an F 44 athlete, prematurely born at 34 weeks, with EZH 2 Overgrowth syndrome, which is a very rare syndrome. My syndrome is a super nova, newly identified syndrome within this syndrome, with various elements of syndromes in this spectrum (Weaver Syndrome, Marfan syndrome and Tall Stature), first diagnosed in 2015. I had a failed operation on my right knee to correct chronic patella dislocation in 2012 when I was only 8 years old.
This operation has damaged my nerves, muscles, growth plate and patella in my right leg. Part of this syndrome is that my connective tissue does not bind. I have patella displacement in both legs and scoliosis of the spine. I wear a back brace 20 hours of the day, permanently walk with the assistance of a walk-on flex on my right leg.
I also wear a permanent knee brace on my left knee to prevent chronic dislocation of my left patella. I had comptodactyly of my little fingers, which was operated on in 2015. Due to the syndrome I have joint polo, secondary to ligmentation and joint constructures. My eyesight is also now affected and I have rapid loss of the sight in my right eye.
Read the full story on the 15th August in the SASAPD Sport Magazine