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Living with FOP is quite hard but I have my twin sister Lucy who has exactly the same thing and makes life a lot easier
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There's only three sets of twins in the whole world that have it. FOP is a genetic condition where your body is slowly turning into bone and you're frozen like a statue
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It's not lonely, we have each other, we can talk to each other about it. It makes it a lot easier. We're a good twin
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You're neat! Sorry. Come on in. If you could fix my hair I would be very grateful
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That's fine. Thank you. Want to just do it in the kitchen? Yes. Alright, perfect
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FOP is a genetic condition where your muscles, tendons and ligaments all turn to bone if
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you bump them. So your body is slowly turning to bone and you're frozen like a statue
0:57
I don really like that saying but it kind of true It completely slowly takes away your mobility what you have so we just have to take every day as it comes and appreciate every day And just live it Yeah There only just over
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800 people in the whole world that have FLP and only three sets of twins in the whole world that
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have it. Zoe would definitely be more affected than me but it's because like we've had different
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injuries throughout the years. Zoe can't walk, she can't feed herself. I can. This is how far
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I can reach. I can't reach any further than that with both hands. I look like a robot
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So Lucy helps me with a lot of tasks. She would help me with my hair and she would help me going
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to the toilet because I can't pull up my own trousers and vice versa. I'm Lucy's taxi because
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I can drive and Lucy can't. So it makes, we make the perfect team don't we
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We are very grateful to have each other. Yeah, I know. It would be very lonely if we didn't have each other, I think
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Wouldn't it? It would be quiet, it might be nice. Eight years old when we were diagnosed with FOPs You didn have your first flare up really until you were At 10 Yeah
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It starts really early childhood. It starts really really young like from birth. Whereas we had a good length of time without anything
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Which I think... I think it's affected us both differently as adults because..
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It's had like different injuries. Had different injuries. I've fallen, broken my arm and I've broken my leg so I can't walk but I use crutches
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and a wheelchair for longer distances and you can still walk and feed yourself
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Lucy and I both create content for Instagram and we create content for brands and we just
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love taking pictures don't we. The beach also has the best lighting
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Our followers are best, they're so kind and thoughtful and lovely. I still get messages like now oh I never heard of FOP thank you so much for educating us and everything else so the word is getting out there and I really grateful for that
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I'm not really sure what the future is gonna hold and FOP wise we're just gonna
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love life and live life and just see what happens but live every day I would
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I would say that the biggest life lesson for both of us is to be patient with yourself
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with the people that are helping you. You have to just, and this is my favourite saying, you just have to have courage for
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the things you can't change because if you don't you will drive yourself crazy, pretty much
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You have to stay positive. Thank you