Life

By Lucy Notarantonio

 

A young woman is turning into a human statue after ‘clicking her neck.’

Whitney Weldon, 27,  was diagnosed with a rare connective tissue disease known as Fibrodysplasia ossificans progressive (FOP) – which causes her muscles, tendons and ligaments to fuse together and turn to bone.

Whitney, from New York, US, was diagnosed when she was nine-years-old after clicking her neck and discovering lumps along her spine.

Since then her joints have progressively worsened as her hips have fused and both arms have ‘locked’ causing her to need a full-time carer and motorised wheelchair.

Whitney, who is a PR and corporate graduate said: “In 2011, I lost all my independence as both legs have limited movement – I was forced to get a wheelchair.

“I resisted it at first as it meant I would stand out even more, it was bad enough that I had to stand in class throughout school as I was unable to sit down on a normal chair.

“But I wanted to go to a university away from home, so a wheelchair was the safest option for me as there is a massive risk of trauma without it.

“If I was to fall over, this could ignite a flair up and speed up the process of my muscle turning to bone.

“All my joints are progressing at different rates; I have to learn how to adapt and grieve for the parts of me that is no longer there.

“My right arm locked over ten years ago, I can still use It but with great difficulty as it is locked at a 130-degree angle.

“My left arm is locked completely down the side of my body; it is traumatising as the body part is there, but I can no longer use it.

“I have lost the ability to drive, style my hair and walk, it is frustrating, but my wheelchair gives me a little freedom.”

Whitney’s condition affects every one in two million people – it can be identified by bony lumps forming.

Since being diagnosed 18 years ago, both her hips have fused and arms – she also has impaired hearing.

She added: “FOP has a mind of its own, you never know when it is going to happen, one day I could use my leg and the next I couldn’t.

“I have two carers, one for the day and the other the night as I need help with everyday duties.

“Unfortunately, I have to accept there is things I can’t do anymore, and my way of life is different to others but I can still go out for coffee, socialise with friends and go shopping.

“I am still a normal girl who enjoys fashion and I try my best to keep up with the latest trends as I can’t do a lot but I can still pick my own outfits and I take pride in that.

“Some days are hard, but I must get on with my life, my parents Hilary, 57 and Bill, 65 are supportive and push me to do what I can.

“We are uncertain about my future, I try not to think about it and continue to have confidence like someone with four functioning limbs.”