Health

Woman, 21, has such fragile bones they break every time she hiccups

Some people go a lifetime without ever suffering the excruciating pain of breaking a bone.

Most of us have broken one or two, and would do almost anything to avoid it happening again.

For 21-year-old Marie Holm Laursen, that is not really an option.

Over the course of her life, she has broken more than 500 bones in her body – each snap triggered by the most mild of movements, from a hiccup to a cough to a hug – due to a rare genetic condition which depletes collagen between her joints.

The pain doesn’t get any easier, nor does the incessant trolling and staring from strangers.

But Marie, from Aarhus in Denmark, says sharing her story through motivational speaking has helped her cope with the pain and connect with the starers.  

Fighting through: Marie Holm Laursen, from Denmark, has broken 500 bones in her lifetime

The 21-year-old was diagnosed with a rare disease called osteogenesis imperfecta at birth

WHAT IS BRITTLE BONE DISEASE? 

Osteogenesis imperfecta is a genetic condition characterised by bones that break easily, and often for little or no apparent cause.

A person diagnosed with OI, also known as brittle bone disease, can suffer anything from a few to several hundred fractures during their lifetime.

OI is caused by a genetic mutation that affects how the body produces collagen – a main component of connective tissues found throughout the body.

Symptoms include:

‘I had a really good childhood, of course I got some cruel comments sometimes and people would stare, they still do,’ Marie explains.

‘The reason people stare is mostly out of curiosity which is rooted in a lack of knowledge which is one of the main reasons for me doing my talks.

‘The condition affects me in my day to day life because of how fragile my bones are, and it can sometimes be more difficult for me to do stuff.

‘Nevertheless, I find it very important not to limit myself because of the fear of breaking something, I need to live my life to the fullest and sometimes that requires me taking some chances.’

Marie was diagnosed with osteogenesis imperfecta when she was just one week old.

The condition can vary drastically from sufferer to sufferer.

A person diagnosed with OI, also known as brittle bone disease, can suffer anything from a few to several hundred fractures during their lifetime.

OI is caused by a genetic mutation that affects how the body produces collagen – a main component of connective tissues found throughout the body.

Marie’s diagnosis came early, but it took a few days for doctors to identify the incredibly rare condition, which affects just 15,000 people in the world.

She seemed a normal, healthy child, but every time her legs moved they made an unusual popping sound.

After a full-body x-ray, doctors discovered it was far more than a harmless click.

‘The sound was my bones breaking,’ Marie explains.

‘I had multiple breaks in my entire body, so they figured out that I had osteogenesis imperfecta.’

There is no cure for the condition, aside from avoiding rough contact.

‘My bones are very fragile, and I have broken about 500 bones in total, even the hiccups can cause me to break a rib,’ said Marie.

‘My worst experience was in 2013 when I fell out of my wheelchair. I broke an awful lot of bones and had a brain bleed. The doctors didn’t know if I would make it and my condition was very critical.’

 Coping: Marie is now a motivational speaker, sharing her story on Instagram and in talks

The condition depletes collagen in her body, making her bones brittle and fragile

Over time, Marie has become more and more comfortable with opening up, and has reached a point where she shares the highest and the lowest points with her Instagram followers

Marie says sharing her story through motivational speaking has helped her cope with the pain and connect with the starers

Support: Marie says her family has helped her through everything (pictured with her sister)

Now, five years on, she is carving out a career sharing her story.

One of the biggest challenges, she said, was having the confidence to be candid.

‘Working as a speaker is probably one of my biggest achievements,’ she said.

‘But it was so frightening to tell my story to a big crowd for the first time and be completely honest.

‘Now I feel so lucky to have this as my job.’

Over time, she has become more and more comfortable with opening up, and has reached a point where she shares the highest and the lowest points with her Instagram followers.

Some of her posts are beaming selfies, or laughing videos with friends. In others, though, she admits she is struggling to cope.

‘I feel like I’ve hit a wall,’ one recent post read, after she broke her pelvis again.

‘”Is it worth it at all?”, I think. Will my pelvis just break again next time I move? Or was it just a one-time case?’

One of the biggest challenges, she said, was having the confidence to be candid

She says it is important to dream big and not hold back because you are afraid of failure

Sharing posts like that, she says, is a kind of therapy she can do for herself, aside from the support she gets from loved-ones.

‘My friends and family have helped me a lot, I don’t know what I would’ve done without them,’ she said.

‘I can handle life with brittle bone disease because of them, they distract my mind when I am in pain because of my fractures and help me when I need it.

‘My biggest hope for the future is to get a family with a husband and kids. I find it very intimidating to say that out loud because I know that it can be more difficult when you have a disability.

‘I think it is so important to dream big and not hold back because you are afraid of failure.

‘You can’t always choose your circumstances, but I believe it’s a choice we make to focus on either the negative things or positive things in life, I try and choose the positive.’

A person diagnosed with OI, also known as brittle bone disease, can suffer anything from a few to several hundred fractures during their lifetime, Marie tells a crowd

Marie’s diagnosis came early, but it took a few days for doctors to identify the incredibly rare condition, which affects just 15,000 people in the world

Source: dailymail.co.uk

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