Zoe Buxton and Lucy Fretwell, 26, both suffer from fibrodysplasia ossificans progressiva (FOP), a condition that affects just 800 people worldwide.
The debilitating condition causes muscle tissue and tendons to be replaced by bone forming outside the skeleton.
Zoe and Lucy, who live in Ballymena, County Antrim in Northern Ireland, are just one of three sets of twins in the world to have FOP.
They were diagnosed when they were eight years old, but have been suffering the side effects since they were small.
Both girls were born with small bony lumps on their toes, a common sign of FOP – but doctors did not detect it at the time.
Zoe, a fashion blogger, said: “When I was five, I fell off the sofa and broke my elbow.
“We thought it was a normal injury until the cast came off and I couldn’t straighten my arm – it was agony if I tried.
“While we didn’t know it then, the bone that had formed over the joint was a result of FOP.”
Zoe learned to adapt to life with use of only one arm while doctors carried out tests to work out why her arm had fused in such a way.
They were eventually diagnosed with FOP.
The condition can cause painful swelling to an injured muscle before bone forms over it.
Lucy, who looks after her older sister’s children, said: “When we were diagnosed, our parents tried to hide it from us.
“They just insisted that we were extra careful.
“We weren’t allowed to ride bikes, roller skate or take PE lessons in case we got injured.”
When Lucy was 11, she tripped over at school and hurt the back of her neck.
The resulting bone growth left her unable to raise her arms over her head.
In the same year, Zoe broke her leg falling off a scooter and was left unable to straighten it.
Zoe said: “After I broke my leg, I had to use a wheelchair.
“I hated it and it resulted in a lot of arguments with my parents.
“But luckily, everyone was always very supportive and we never had any nasty comments at school.”
When Zoe was 17 she met her now-husband Mike Buxton, now 29, a gasman, online.
She was upfront about her condition and Mike wasn’t fazed.
Zoe said: “Mike’s a selfless person, and he always puts me first.
“He understands that I get frustrated when it takes me an hour to get dressed in the morning, and he never complains.”
In her day-to-day life Zoe uses crutches to walk but sometimes needs a wheelchair for long trips away from home.
Zoe and Mike married in 2012, and Zoe chose to walk down the aisle instead of using her wheelchair.
She added: “Just because I have a disability, it didn’t mean I couldn’t enjoy the happiest day of my life.”
What is fibrodysplasia ossificans progressiva?
Fibrodysplasia ossificans progressiva (FOP) is a disorder that causes muscle tissue and connective tissue such as tendons to be replaced by bone that forms outside the skeleton.
The process generally becomes noticeable in childhood, usually starting in the neck and shoulders and proceeding down the body.
Extra-skeletal bone formation causes progressive loss of mobility as the joints become affected.
Any trauma to muscles, like a fall or medical procedure, may trigger episodes of muscle swelling and inflammation, followed by ossification – the formation of bone.
People with the condition are often born with malformed big toes, short thumbs or other skeletal abnormalities.
There are no known effective treatments for FOP.
Some drugs have been used to reduce pain and swelling.
Occupational therapy treatments like special shoes and braces can help manage the symptoms.
Biopsies and invasive tests are not recommended due to the trauma they cause muscles.
Sister Lucy met her now-fiancé Michael Smyth, 27, a teacher, in 2015, and the couple got engaged a year later.
Michael helps his wife-to-be with everyday tasks like washing her hair – something she is unable to do herself.
Lucy said: “When Michael proposed while we were on holiday last year, I was ecstatic.
“We’re getting married in July 2018 and I’ve already got everything planned.”
But while the twins try to think positively, their condition means that their future is uncertain.
FOP can become worse over time, meaning Zoe and Lucy are likely to lose mobility in more of their body.
Zoe said: “Mike and I would love to start a family, but there is a 50/50 chance that I’d pass on FOP to my child.
“He would rather me be alive and healthy than have an ill wife and child.”
Lucy agreed, adding: “I’d love kids one day, but it’s not an option at the moment.
“We’d definitely consider adoption after we get married.”
The twins are undergoing a clinical trial in London for a new drug that might help their condition.
So far, neither of them have had any more bone growth.
Lucy said: “It is difficult to stay positive, but it helps to have someone else going through the same thing as you.
“Sometimes I feel guilty that I have more mobility than Zoe.
“We support each other through the bad days and have also joined an awareness group to meet other people with FOP.
“It helps to spend time with other sufferers, because everyone knows what you’re going through.
“Zoe and I will always have each other, and we’ll never let our condition hold us back.”
Michelle Davis, executive director of the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), said: “Research data shows that around one in two million people have FOP.
“There is believed to be about 800 known cases of people living with FOP in the world.
“It is what we call an ultra-rare disease, but there is a lot of research work happening.”
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