Real Voices interview: Samantha Renke
Samantha Renke talked to Iona Twaddell about living with brittle bone
disease, a genetic condition that causes bones to break easily
What do you do?
I used to be a language teacher, but I’m now working in marketing and PR. I’m also doing some acting – I’m quite busy! I’m 27 and currently living in London.
What is brittle bone disease?
It’s a genetic disorder that affects type I collagen in the body and is also known as osteogenesis imperfecta. There is a lot of collagen in our skeleton, so it causes us to have very low bone density and fragile bones. Owing to multiple fractures, people with the condition usually have stunted growth. This happens because when you’re constantly fracturing, the body needs to attend to the fracture before it can continue to grow. The new bone that grows back is very weak and can also be deformed, causing bowing of the arms and legs. Usually we have scoliosis, which is a curvature of the spine. That can push on our heart and lungs. I’ve got type III osteogenesis imperfecta, which means that I’m a full-time wheelchair user. I’ve had approximately 200 breaks in my life. They actually started in the womb, when my mum was carrying me. When I was a baby I would fracture up to a few times a week. There’s no indication when I’m going to break: I’ve been tipped out of my chair onto a pavement and nothing’s happened to me, but I’ve rolled over in bed and snapped my collarbone.
When were you diagnosed?
My mum wasn’t aware when she was carrying me that I had the condition, but the diagnosis was quite quick after my birth. Because the doctors weren’t aware of my condition they delivered me normally, which resulted in multiple fractures.
Are there any treatments?
There is no known cure, but there are a few drugs (bisphosphonates) that can be taken to increase bone density. Curvature of the spine can often be rectified by putting rods into the back, which I’ve had done. I also have telescopic rods in my legs to support them and to correct any bowing.
How do you describe your condition?
I use the term brittle bones, not osteogenesis imperfecta, because it just gets confused with osteoporosis. I say that my bones are quite fragile, but I do make it clear to people that if they touch me I’m not going to break.
How does it affect your life?
I find it quite hard to get about; I have to be very aware of my surroundings and make sure I’m quite safe when I go out. I try to avoid crowded places like the London Underground – although people wouldn’t necessarily try to hurt me on purpose, if I get hit by a bag or someone falls on top of me then it can be quite detrimental. I’ve got short limbs, so I need to have adaptations done to the house. For example, I’ve got a wetroom as a bathroom because I’m not able to get in and out of the bath as my body can’t bear its own weight. I’m 27, but I don’t look my age. I also sound quite childlike, so people who don’t know the condition can confuse me for a teenager. That can be quite difficult at times.
What’s the most difficult thing?
Analysing everything I do and reducing all the risks. If I’m going out for drinks with friends I have to think: how am I going to get there? What happens if they don’t have a disabled toilet? What happens if there is a flight of stairs? So I do have to do a lot of planning for even the simplest of activities.
How would you like people to view disability?
I’m quite eager to make sure that people view disabled people as integral to society. I’ve always been very positive and achieved a lot in my life – in spite of the fact that I’ve had to battle a lot due to my health, and because we don’t live in a world that is designed for disabled people.