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Hey there I'm Kirsten and welcome to my first video!
I am so excited to get started on this. So I've been thinking
about my first topic and I just, I'm not...
I hadn't been sure what I was going to do.
Because I had so many ideas, like, rolling around inside my head but
like, none of them sounded right for the first video.
So I thought today I would talk about
my condition which, um,
I briefly mentioned in my introduction video.
Basically I have a physical disability and I'm in a wheelchair
and part of what I wanted to do with making videos
was to, you know, share my story and my experiences
and how I've adapted and things like that. I have a condition
called Osteogenesis Imperfecta, or OI.
It's way easier to say OI.
Basically, the easiest,
simplest definition of it is brittle bones.
That's what I say when people ask me why I'm in a wheelchair, or,
something like that and I just say, "oh, I have brittle bones."
But then there's like a longer
more complicated definition of it. Basically
it is a lack of collagen in the bones.
Like, your body just doesn't make enough collagen. Collagen
is what makes your bones
I guess, like, dense and, um,
less fragile.
I don't understand it a hundred
percent you know all the genetics and all that that go into it
and why exactly it causes brittle bones.
I have heard a lot of different thrown around and why
but its just really really complicated and I,
as somebody with OI and as a patient
even I have trouble understanding.
There are different types of OI and they all vary in severity
and different characteristics and side effects that go along
with each type.
So I have type 3/4, and that is the more moderate,
the more moderate to severe type of OI.
And this means that I have characteristics
of type 3 and type 4.
So, some of the characteristics of type
3 and type 4 could include;
short stature, poor vision
hearing loss, barrel rib cage,
um, bowed limbs. Like, bowed legs and arms.
Some of the characteristics that I have are;
short stature, I'm about 4 feet.
I also have a barrel rib cage, a barrel shaped rib cage.
Which makes shopping for bras and clothes
really fun let me just say! I also have blue sclera, but
some days it looks kind of gray
more than blue. I also had bowed legs
when I was a kid and then my right arm, my upper right arm kind of
bows a little bit. and of course the brittle bones.
Right now there is not much research happening
with OI and there really isn't that much,
or, that many treatments that you can take
especially as an adult. As a kid there are
options. There are pamidronates
and bisphosphonates, which basically
um, will build up your bone density.
As a kid that is what I had, I had,
I took bisphosphonates. It's such a weird word!
Bi-phos-phonates, which basically just
built up my bone density to a, like, normal level
and then I also had rods put into my legs
which straightened my
curve that I had in my lower legs. It also
helped to prevent breaking
so easily. I can still break around the rod and I actually have before.
So, um, it's just there
as a barrier, so you know, it doesn't break as easily as it would if I didn't
have them. So some of the ways that it has affected me personally, is,
it's made me have to be adaptable.
Did that make any sense? It made me have to be...
anyways it's made me a more adaptable person.
I can pretty much do, you know,
most things any body else can do.
I just have to adapt a little bit, or do it differently. I always say I do
everything my way, because you know, I just,
I don't always do things the way that everybody else does, I
do it my way! I definitely have to be quick, because, um, I constantly being put
in situations where I have to adapt and I have to figure out
how to get what I need,
and to do what I want to do. I feel like
I do most of the things that I want to do.
Another thing with OI is you have to be very super aware
of your environment. You have to always be watching
where you're going and, I mean everybody has to watch where they're going, but like,
you have to always be watching for
um, bumps in the sidewalk and curb cuts,
and you know just make sure that you're not going off the sidewalk.
I mean you just always have to be aware of
everything. I cannot walk, I use an electric wheelchair
and when I'm out and about, I always
have to watch out for holes and um,
making sure that I can fit somewhere.
I mean, it's just, you always have to be aware
of your environment. That way you can also avoid
injury. You know it's basically you're constantly always
making sure that you do not get injured.
For me, that's like, it.
It feels like everything that I do I'm constantly
making sure that you know, what I'm doing will not end up with me
in a cast at the end of the day. OI, you know, even though it's a huge part of my
life.
I mean it is why I am
who I am I guess you could say.
Even though it's such a huge part of me.
It really really is such a small part as well.
Like I don't know if that makes any sense and I say it all the time.
You know, it's a huge part of me, but it's really a small part
of who I am, you know?
There's so much more to me than OI, and sometimes OI can make
itself very very present in my life
and, um, I think most people with OI would agree that
sometimes it's louder then you would like it to be.
I try not let it affect me too much and I try not to let it get in the way of
the goals
that I have and the dreams that I have.
I think that's all, um, that I wanted to talk about. I just wanted to kind of give
a brief overview of OI, and
you know, what is involved in the condition.
And I also wanted to explain, you know,
how it's affected me personally. I'll link a couple of great
websites, like the OI foundation
down in the information box and so
if you want to learn some more. Because I don't think I really did that great
of a job
explaining it. Thank you so much for watching!
And I'll see you next time! BYE! :)