LIFESTYLE
17/02/2016 06:48 GMT | Updated 17/02/2016 06:59 GMT

Woman Whose Muscles Are Morphing Into Bone Shares Message Of Positivity: 'I Won't Let It Control My Life'

A teenager battling a rare condition that turns her muscles into bone has said she won't let her illness get in the way of the things she loves.

Luciana Wulkan, 17, from Bolton, suffers from fibrodysplasia ossificans progressiva (FOP) - an extremely rare connective tissue disease which affects just one in two million people worldwide.

So far, various parts of her body including her hip muscle, wrist and jaw have locked - the latter making eating incredibly difficult. She also has limited movement in her arms.

But the brave teen refuses to let her deteriorating health hold her back and is hoping to attend university later this year.

luciana wulkan

Luciana Wulkan

The full-time student, who is studying for her A-levels, was diagnosed aged two-and-a-half after her parents, Pina Di-falco, 48, and Sandro Wulkan, 46, watched a TV programme about FOP and realised their daughter had the same symptoms.

Luciana was born with a stiff neck and, as she grew older, her mother Pina noticed she struggled to move her joints.

"The condition is slowly calcifying my muscles and other soft tissues into bone," explained Luciana.

"It eventually leaves people with very limited movement but I'm not focusing on that, I won't let it control my life.

"My hip muscle fused when I was seven and my jaw locked about three years ago which made eating really difficult, however I've since adapted to this.

"Both of my arms have limited movement so I can't put my arms over my head and my right wrist is also fused.

"But I still manage to do all my makeup myself and I've not allowed the condition to affect my studying."

Luciana has high hopes of going to university this year to study business and marketing.

She added: "Even though I have my disadvantages, I will still try my best to get my degree and a job afterwards. I enjoy being sociable and going shopping and dining out with my friends and family.

"Regular movement stops me from getting stiff and helps loosen the joints in my body."

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Luciana's mum, Pina, said that the condition can be brought on by "a slight trigger".

In Luciana's case, she fell down the stairs and bumped her head which, her mum said, triggered the condition.

"Bumps and falls can result in a flareup which then often lead to further muscles turning into bone," Pina explained.

"Both myself and Sandro are so proud of how she has dealt with the condition, it's extremely rare so not many doctors even know much about it.

"It wasn't until we watched a documentary on TV that we realised Luciana had FOP. She had all the same symptoms as the child on screen and thanks to the resemblance, she was finally diagnosed by two American professors."

Pina said it was a "relief" to know what was wrong with their daughter, but added that they were "heartbroken" when they found out how it would later affect her life.

"Thankfully, although the condition causes her muscles to turn into bone, it is not painful all the time," added Pina.

FOP affects just 40 people in the UK. But despite being so rare, Luciana has still managed to meet others with the disease.

She said: "It's amazing to speak to others who have the same experiences as myself.

"It's so rare but I have made friends with another sufferer in the UK called Rachel who also has the condition."

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Luciana doesn't let her condition get in the way of her interests and is particularly fond of baking cakes, cooking for family members and doing makeup for friends and loved ones.

She added: "I do everything a normal teenager does, I might not have full movement in my joints but it doesn't define who I am.

"I love all my hobbies and I've started doing makeup for friends and family on the side, hopefully it'll be a nice way to earn a little bit of extra cash."

A spokesperson from FOP Friends, a UK-based charity that raises funds to support research, said: "FOP turns otherwise healthy people into human statues: a healthy mind locked inside a frozen body.

"FOP is one of the most disabling genetic conditions known to medicine.

"Children with FOP appear normal at birth except for turned in big toes.

"Trauma - including biopsies, immunisations, surgery, knocks and bumps - can accelerate the progression of FOP."

For more information visit: www.fopfriends.com.