Born with Brittle Bones

Born with Brittle Bones

Born with a congenital bone disorder called Ontogenesis Imperfecta (OI), I have been in a wheelchair for most of my life. OI, otherwise known as brittle bone disease, is mostly caused by a dominant genetic defect that causes bones to be incredibly week, loose joints, spinal curvature and poor muscle tone. The prognosis for a person with OI varies greatly depending on the number and severity of symptoms. Respiratory failure is the most frequent cause of death for people with OI, followed by accidental trauma. Despite numerous fractures, restricted physical activity, and short stature, most adults and children with OI lead productive and successful lives.
I have a severe case of OI and my bones fracture easily. With the condition (which affects 1 in 20 000 births) comes scoliosis, I also suffer from scoliosis in my back, which has caused me to be short in stature. Sadly there is currently no cure for OI and I will likely never be able to walk and I depend on my electric wheelchair to get me places.

When I was born, doctors could already see there was something wrong with me. So they did tests and found out about my condition. That is when they diagnosed me with OI. It was a very sad day for my parents and the rest of my family as they didn’t know much about it and they had so much to learn. I have broken many bones over the years since I was born. I had many fractures that were caused by falling, pulling to hard on my arms and legs and lots of back pains. But all I did was put it in a cast or I use to lay on a soft pillow and wait for it to heal. Now that I am older I don’t get as much fractures and I’m much stronger as I was before. There is surgery that can make your arms and legs straight and the possibility of making you walk, but I never went I know of people that’s like me and they went for the surgery and it wasn’t worth it because they get so much pain from it. Although there is no cure for OI, symptoms can be managed by caring for broken bones, brittle teeth, pain medication, physical therapy, use of wheelchairs, braces and other aids.

Being in a wheelchair and being disabled has affected my quality of life but I am optimistic that it wouldn’t affect my career opportunities. Everywhere I go people will stare or make fun of me. As I have gotten older I have gotten over it. I realised God made me this way for a reason and unfortunately you are always going to get some people who will stare, but its life and you cant do anything about it. Also its been hard for me to do certain things, especially in public places that are not wheelchair friendly. Luckily I always have my friends or family around and they help if there are stairs I cant access. Unfortunately I am dependent on my parents to drive me where I need to be, but I have passed my learners and am now waiting to get a car.

II think the younger and older generation have general difference regarding disabilities because I think the younger generation doesn’t really understand it.

Published by Sandi-Lee -Permall

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