WEB DESK: A 17-year-old is battling with a rare disease which is turning her muscle into bone. In short she is transforming into a human statue.
Luciana Wulkan, from Bolton, suffers Fibrodysplasia Ossificans Progressiva (FOP) – an extremely rare connective tissue disease which affects just 800 people worldwide.
Also known as Stone Man Syndrome, the incurable disease turns muscle, ligaments and tendons into solid bone.
She was born with a stiff neck, and began struggling to move her joints as she grew.
Now studying for her A-levels, her jaw has also locked and she has lost the use of her right hand after her wrist muscles fused into bone.
However, despite all odds, she remains positive and even does her make up every day with her left hand.
Wulkan said: ‘The condition is slowly calcifying my muscles and other soft tissues into bone.’
‘It eventually leaves people with very limited movement but I’m not focusing on that, I won’t let it control my life.’
She was diagnosed at two-and-a-half-years-old 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.
She said, ‘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 make-up myself and I’ve not allowed the condition to affect my studying.’
Wulkan wants to go to university this year to study business and marketing.
‘Even though I have my disadvantages, I will still try my best to get my degree and a job afterwards,’ she said.
‘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.’
FOP is a genetic condition, but can be triggered by episodes of trauma, including knocks and falls.
Wulkan’s mother, Mrs Di-Falco believes her daughter’s condition was triggered when she fell down the stairs and bumped her head.
‘For Luciana living with FOP, bumps and falls can result in a flare-up which then often leads to further muscles turning into bone.’
She continued, ‘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.’
Her daughter had all the same symptoms as the child on screen and was eventually diagnosed by two American professors.
She said, ‘It was a relief that we knew what the condition was but as parents we were heartbroken by how it would later affect her life. I might not have full movement in my joints but it doesn’t define who I am.”
‘Thankfully although the condition causes her muscles to turn into bone it is not painful all the time.’
FOP is so rare it affects just 800 people worldwide, and just 40 people in the UK.
However, Wulkan meets others with the disease.
She said: ‘I’ve met other people all over the world with FOP and 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.’