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The Teenager with Vanishing Bones | Living Differently

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Apr 22, 2019

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The Teenager with Vanishing Bones | Living Differently
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Transcription

  • The disease causes bones all over my body to disappear.
  • I'm in pain every day and every minute of every day.
  • So I kind of have to do something to get me distracted,
  • because if I focus on it, it'll hurt a lot more.
  • I have idiopathic multicentric osteolysis.
  • This means that I'm tired a lot
  • because all my bones are, like, putting pressure on something.
  • Good boy.
  • Or that the skin and the muscle are basically working
  • to keep all my extremities together.
  • So the more I use them, the more I'll be in pain and tired.
  • Basically, her body is absorbing the calcium from her bones
  • and essentially making them disappear.
  • So, Natalia, she's got no carpal bones, no tarsal bones.
  • And it affects the smaller bones first.
  • There's just severe deterioration in her knees.
  • Her shoulders and her elbows are basically held together
  • by just the soft tissue around there, the nerves.
  • She's had a motorised wheelchair
  • since she's been in first grade.
  • About 2013, it was getting very difficult for me
  • to carry Natalia.
  • So we decided to add on to the house
  • and put the wheelchair lift
  • and to at least give her the access to her bedroom with her chair
  • and give her some independence.
  • We cut her food for her
  • so that she can, again, be independent and feed herself
  • to the extent that she can.
  • But even if I'm having a tough day,
  • I feel like I want to push through it
  • because I don't want the pain
  • to impact on the quality of my life.
  • I just want my life to be as normal as possible.
  • It does get a little frustrating,
  • but I think I've just been able
  • to figure out a different way to be independent.
  • Something that distracts me is art.
  • I like digital art,
  • so I love drawing on my iPad
  • because it's sometimes easier than drawing on paper,
  • which gets me a little tired.
  • She's very stubborn, but in a good way.
  • She sticks to her own path,
  • she doesn't let you deter her from what she wants to do
  • and sometimes she is right.
  • She's creative. She does a lot of drawing work,
  • and she's strong with what she goes through on a day-to-day basis.
  • It's hard knowing what she deals with, and, like, all the pain.
  • My mom works from home three days a week,
  • so she usually helps me in the morning,
  • and then my dad usually helps me get my breakfast
  • and then takes me to school.
  • Thank you very much.
  • I meet her at the door,
  • open the door for her.
  • Oh, hi. Hi.
  • Hiya!
  • She prefers to be independent.
  • I let her be independent
  • unless she tells me she needs some assistance.
  • Put it in a new file, right? Mm-hm.
  • Natalia is a great student.
  • She does a very, very high level of work,
  • works very, very hard
  • and she's one of our best students.
  • Dr Smith helps me with all the problems
  • that my bones are having.
  • Like, at the moment, I'm having shoulder pain.
  • They haven't really figured out a solution for most of my pain...
  • But there's still no answer to relieve the pain.
  • It's just more of managing her pain at this point.
  • Hello. Hi, Dr Smith. Hi.
  • Hi, how are you? Good. How are you?
  • How are you, Natalia? Hi.
  • How are you doing? Good. How are you? Good. Good.
  • How has your pain and stuff been lately?
  • Like, getting the normal, like I've been telling you,
  • like, the shoulder and the back pain. Right.
  • This is a very rare condition.
  • We've only seen a few cases and each child is specific.
  • Well, I've been following Natalia since she was three years old,
  • and it's actually poorly understood.
  • And how has your neck been?
  • It's the same. It still feels like it's ready to drop
  • because it feels like a bowling ball in my head, like, the weight...
  • Do you feel it's weak? Yeah. Yeah.
  • Is it all day, or...? Yeah, it's all day.
  • All day, so sometimes I'm...
  • It gets tiring to sit up.
  • We've tried different kinds of medications
  • to treat it and other complicated aspects of this disease.
  • For us, we expect
  • that she might have some progression of her disease,
  • but she should always be fairly functional
  • in her chair.
  • We are working with different kinds of adaptive things
  • so that she can become a productive adult.
  • I think I'm going to do that one there.
  • They can go up.
  • Or we could start the first round and then...
  • Oh, wait, I can't go.
  • I like bowling because it sort of gives me a place
  • to put all my stuff, like, struggles into.
  • And I don't have to focus on anything else
  • and I can sort of get out of it while I'm bowling.
  • OK, put the V on the top.
  • You know, like, that people may be struggling
  • with this condition,
  • and I feel like you should never let it affect you
  • because there's more to you than this disease.
  • Ready, set, go.
  • Hey! Look at that!
  • Oh!
  • NATALIA SHRIEKS

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Description

Natalia was born with a rare disease called idiopathic multicentric osteolysis, which means her body is slowly absorbing her bones - literally making them ‘vanish.’ The 14 year old deals with constant pain, and it impacts everyday tasks like eating, dressing and going to school. Yet Natalia is determined to not let the condition dictate her life. She has developed a passion for art, is a top student at school and loves to socialise with her friends.

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