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Instagram blogger and life with a rare disease – her muscles and tendons turn into bones

Zoe Buxton can not get dressed or put on her hair, but this does not prevent her from having a model blog on the social network.

Zoe Buxton Photos from her instagram
Zoe Buxton Photos from her instagram

At first glance, the instagram 27-year-old British Zoe Buxton seems normal. In photos, she poses in various outfits, providing posts with a brief description of her daily life. Since about 2017 she has been keeping a fashion blog, and during this time more than 11 thousand people have subscribed to her on Instagram.

This is a relatively small number, but Buxton cannot be called a professional model. For her, blogging is a way of self-expression, as well as a chance to learn more about the possibilities of her body. The latter is especially important for her, because due to a rare disease, her muscles and tendons slowly turn into bones. One day it can lead to death.

Life with ailment

Fibrodysplasia , better known as the “stone man syndrome”, occurs in two cases per million. This genetic disorder transforms muscles, tendons and ligaments into bones, forming a “second skeleton”. In the later stages, life with him is impossible. There is no cure for fibrodysplasia.

Buxton practically does not move his hands and left thigh. The development of the disease is unpredictable, so one day she can wake up and realize that her jaw has also become motionless. “Do not get me wrong, it is very difficult. On Instagram, everyone poses, but I can’t, so I just stand with my crutches, ” says the girl in an interview with BBC.

Preparing and publishing photos on Instagram is a whole process that is impossible without Buxton’s husband named Mike. He helps his wife to pick up an outfit, get dressed and put on her hair, and then takes pictures. “I need his help in most things, and since he likes taking pictures, he is happy to take and edit pictures for my profile,” says Buxton.

They met when the girl was 17 years old, and Mike – 29. A British woman immediately told the man about her illness, it did not scare him away. The couple got married in 2012, after which Zoe began to use the wheelchair less often and walk more on crutches. Sometimes she worries that the latter are too striking in the photographs, but tries not to think about it. “I love fashion and always loved to pick up clothes, so I made an account on Instagram,” the girl continues.

For the first time she found out about her illness in childhood, when she broke her leg, after which she stopped moving forever. About 800 people with the same disease are known in the world, but the Buxton story is even more unique, because her twin sister Lucy Fretwell suffers the same disease. Together they represent one of three pairs of twins in the world who are confronted with fibrodysplasia.

Two twins and one disease

Zoe and Lucy were born with little bone knobs on their toes. This is a common sign of fibrodysplasia, but the doctors did not notice it. Officially, girls were diagnosed with the disease at the age of eight, although strangeness began to appear much earlier. When she was five, Zoe broke her elbow when she fell off the couch and lost the ability to move her arm even after recovery.

Zoe and Lucy in childhood Photos from their family archives
Zoe and Lucy in childhood Photos from their family archives

Parents continued to hide the truth from the twins after the diagnosis. They were forbidden to ride a bicycle, rollerblades, and exercise, explaining this to precautions. But by the beginning of adolescence it was no longer possible to hide the truth – at the age of 11, Lucy fell at school and injured her neck, after which she lost the opportunity to raise her arms above her head. That same year, Zoe broke her leg when she fell off her scooter and could no longer unbend it.

Zoe and Lucy in 2017. Photo from their family archive.
Zoe and Lucy in 2017. Photo from their family archive.

Lucy met her lover (the same age) in 2015. A year later, they got engaged and have since lived together. It is not known how much time is left for girls until the moment when the disease disrupts the functioning of the internal organs, leading to death. The last few years, the sisters have been experiencing experimental treatment in London, until they have seen new bone growth. But because of the disease, their muscles constantly hurt.

Girls want children, but this imposes additional risks with the development of the disease. “I would love to start a family, but there is a 50% chance that I will pass fibrodysplasia to my child,” says Buxton. Her sister has the same thoughts. Probably, in this situation, they have to either take the risk or take the child from the orphanage.

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