Twins With Rare Disorder Say It Feels Like They're Turning To Stone

Jan 27, 2022 by apost team

There are a lot of things that able-bodied people may take for granted. One of these is the ability to move freely and without pain. For twins Zoe and Lucy Fretwell, tasks like getting dressed in the morning and putting on makeup could take hours and cause discomfort. This is because the twins live with fibrodysplasia ossificans progressiva or FOP. This disorder causes damaged muscle tissue to regrow as bone, causing the person to lose mobility in those areas. The twins are from Northern Ireland and have compared the feeling to being turned to stone.

This condition is caused by a mutation of the ACVR1 gene and affects around 800 people in the entire world. Lucy and Zoe are one of three sets of twins to develop the disorder. FOP is usually diagnosed before patients are 10-years-old, but most people are born with malformed big toes or lumps of bone at the joints. Flare-ups are usually caused by trauma or damage to tissue and joints but can also happen spontaneously. 

As of 2017, Lucy had more mobility than her sister Zoe, and both of the twins were undergoing a clinical trial for a new drug that seemed promising. The median life expectancy for people with FOP is age 40. The most popular case of the disorder was of Harry Eastlack, who passed away in 1973 without ever meeting another person with FOP. His entire body was ossified, and at the time of his death, he was only able to move his lips. Eastlack donated his body to science, and his skeleton is now on display at the Mütter Museum in Philadelphia. 

Read on to learn more about the twins and their experiences with FOP.

Lucy shared that when she and Zoe were children, their parents had tried to keep the diagnosis a secret. She 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."

One day Zoe was playing on a scooter as a child and fell and broke her leg. "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," she shared.

Living with FOP has not stopped the twins from having full lives. Zoe was able to meet her husband online. She 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."

According to New York Post, for her wedding in 2012, Zoe even decided to walk down the aisle instead of using her wheelchair. She said:

"Just because I have a disability, it didn't mean I couldn't enjoy the happiest day of my life." 

Lucy also got married, coincidentally, to a man named Michael as well. She was rightfully excited about the news, as she told New York Post back in 2017:

"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."

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However, even with this happiness, the challenges of FOP can still bring her down. Lucy explained:

"It is difficult to stay positive, but it helps to have someone else going through the same thing as you."

When it comes to the sisters thinking about starting their own families and having children, the decision is more complicated than many may think. 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."

Even though the sisters don't think they'll have children of their own, they're not counting out other options. Lucy said:

"I'd love kids one day, but it's not an option at the moment. We'd definitely consider adoption after we get married."

Zoe told Truly that the condition makes "your body becomes frozen, like a statue," while Lucy said, "FOP is so unpredictable, so all we can do is love life and live life."

Lucy also went on to explain that despite the fact that she and her sisters are twins, they have different levels of difficulty with their condition. Lucy admitted:

"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."

Have you heard of this disorder? Let us know, and be sure to send this along to all of your friends and loved ones.