MEET the twins battling a one-in-two-million condition that is slowly turning their muscles to bone. Lucy and Zoe, 30, from Northern Ireland, were both born with fibrodysplasia ossificans progressiva (FOP). The condition, which is so rare that the sisters are one of just three sets of twins in the world known to have it, causes muscle tissues and tendons to be replaced by bone, growing outside the skeleton. Zoe said: "Your body becomes frozen, like a statue." After being diagnosed aged eight, despite the medical challenges they faced, they enjoyed a happy childhood. But as adults, they have become more affected by the condition - with Zoe now requiring a walker or wheelchair to get around. Knowing exactly how the other is feeling means they have forged an unbreakable bond, and often document their adventures together on Instagram, where they are both trying to raise awareness of FOP. Though it is uncertain how the condition will continue to progress in the future, both women are determined to stay positive. Lucy concluded: "FOP is so unpredictable, so all we can do is love life and live life."
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00:00Living with FOP is quite hard but I have my twin sister Lucy who has exactly the same thing
00:05and makes life a lot easier. There's only three sets of twins in the whole world that have it.
00:11FOP is a genetic condition where your body is slowly turning into bone and you're frozen like
00:17a statue. It's not lonely, we have each other, we can like talk to each other about it. It makes
00:23it a lot easier. We're a good team. You're late! Sorry. Come on in.
00:36If you could fix my hair I would be very grateful. That's fine. Thank you.
00:40Want to just do it in the kitchen? Yes. All right, perfect.
00:44FOP is a genetic condition where your muscles, tendons and ligaments all turn to bone if you
00:50bump them. So your body is slowly turning to bone and you're frozen like a statue.
00:57I don't really like that saying but it's kind of true. It just completely slowly takes away
01:02your mobility, what you have. So we just have to take every day as it comes and appreciate every
01:06day. And just live it. Yeah. There's only just over 800 people in the whole world that have FOP
01:12and only three sets of twins in the whole world that have it. Zoe would definitely be more
01:18affected than me but it's because we've had different injuries throughout the years. Zoe
01:24can't walk, she can't feed herself. This is how far I can reach. I can't reach up any further
01:30than that with both hands. I look like a robot. So Lucy helps me with a lot of tasks. She would
01:36help me with my hair and she would help me go into the toilet because I can't pull up my own
01:41trousers. And vice versa, I'm Lucy's taxi because I can drive and Lucy can't.
01:48So we make the perfect team, don't we? We are very grateful to have each other.
01:54Yeah, I know. It'd be very lonely if we didn't have each other, I think.
01:59Wouldn't it? It'd be quiet, it might be nice.
02:05Eight years old when we were diagnosed with FOP. You didn't have your first flare-up really until
02:10you were 10? Yeah. It starts really early childhood. It starts really, really young,
02:15like from birth, whereas we had a good length of time without anything, which I think...
02:23I think it's affected us both differently as adults because... We've had different injuries.
02:30So I've fallen and broken my arm and I've broken my leg so I can't walk but I use crutches and a
02:36wheelchair for longer distances and you can still walk and feed yourself.
02:45Lucy and I both create content for Instagram and we create content for brands and we just
02:50love taking pictures, don't we? The beach also has the best lighting.
03:01Our followers are the best. They're so kind and thoughtful and lovely.
03:04I still get messages like now, oh I've never heard of FOP. Thank you so much for
03:09educating us and everything else. So the word is getting out there and I'm really grateful for that.
03:21I'm not really sure what the future's going to hold FOP-wise.
03:25We're just going to love life and live life and just see what happens.
03:30Live every day, here it comes. I would say that the biggest life lesson for both of us
03:36is to be patient with yourself, with the people that are helping you.
03:41You have to just, this is my favourite saying, you just have to have courage for the things
03:46you can't change because if you don't you will drive yourself crazy, pretty much.
03:51You have to stay positive.
03:59you