00:00My rare condition causes my bones and teeth to break with ease.
00:04I broke three ribs getting out of bed, and I shattered a tooth just eating a sandwich.
00:10A lot of people have accused me of faking my disease.
00:15People act like I'm made of glass, and if they touch me, oh my gosh, I'm going to shatter
00:20into a million pieces.
00:21Today I'm going to be going to physical therapy.
00:25I was around five years old.
00:26I broke my elbow.
00:29They did not fix it correctly back then, so we're still dealing with the effects of that
00:33now.
00:34More sore.
00:35I'm going to say I've had around 25, like, different fractures and breaks over the course
00:44of my life.
00:45I broke my ribs getting out of bed.
00:50I broke my nose falling down the stairs.
00:54Talking about teeth, that one just, like, completely chipped off at the back because
00:59I had decided to try Cinnabon for the first time.
01:03I don't know how.
01:04It was very soft.
01:05I have a rare form of brittle bone disease called hypophosphatasia, HPP for short.
01:10HPP is an inherited genetic disorder that causes your body to not be able to produce
01:17enough alkaline phosphates, which is necessary in, obviously, the production of bones.
01:23I was only diagnosed at 17 years old, but I know I broke countless bones before that.
01:28The first time my family and I realized that I had broken a bone, I was around five years
01:33old.
01:34My mom was the only one who was home.
01:36She heard me, like, blood-curdling scream and rushed to find me, like, clutching my
01:41arm.
01:42I broke my elbow in more ways than one.
01:47I managed to break the olecranon, which apparently kids aren't supposed to break.
01:52They did not fix it correctly back then, so we're still dealing with the effects of
01:56that now.
01:57Probably been close to a month now since surgery.
02:00When you break your olecranon and break the growth plate and everything going on in that
02:05elbow and they don't fix it properly, things don't go well.
02:09In my case, the doctor told me that there was a ligament that was directly pressing
02:13on the ulnar nerve pretty much at all times, and it caused severe sensory loss in the arm.
02:19And because of that, we did have to pop that baby open and decompress it.
02:24I have this little guy.
02:26My family, they don't really bring it up or treat me differently.
02:32We talk about it and we laugh about it.
02:34They know I like to joke about the various ways I've broken things.
02:39They try not to give me something to be sad about, you know.
02:42Got the little bowed knees here.
02:44Yeah.
02:45When she was first learning to walk, she was actually bow-legged as well as she would
02:51not walk on her own feet.
02:53She would walk tiptoed and on all fours, which is actually pretty much almost a 100% indicator
02:59of this disease because they don't have the strength in their own bones to hold them up.
03:05And no, that's not a develop differently kind of issue.
03:08That is an actual disease issue.
03:12My mom has been supportive and has been by my side pretty much my entire life and has
03:17been accompanying me to all of my various doctor's appointments, especially the ones
03:21before I was like 18 and wasn't really in a place where I could advocate for myself.
03:28Even when she had her serious break, still nobody picked up on that there was something
03:33wrong.
03:34There are so few doctors that even recognize what this is.
03:38You really have to fight.
03:39I don't think I would have gotten this diagnosis or really any of the diagnoses I've had if
03:45she wasn't there with me.
03:47It was bittersweet because it was like obviously great knowing the answer, but it was kind
03:54of depressing because it was like, that's the sentence that you have to live with for
04:00the rest of your life and there's nothing you can do about it.
04:04Even after the diagnosis, we never told her not to do anything because I don't want her
04:10to feel like she's limited.
04:11Has it affected your confidence?
04:15To an extent, but it's not necessarily the HPP itself that affects my confidence.
04:22It's more so how people react to me having HPP that affects my confidence and how they
04:28treat me differently for having it.
04:31They act like I'm made of glass and if they like touch me, oh my gosh, I'm going to shatter
04:36into a million pieces.
04:37I've kind of discovered that living my life in fear and with caution the entire time,
04:45that's not going to help me really at all.
04:48I believe the first video I ever did make was just about like one of my breaks in a
04:54conversation between me and my doctor and that video did really well.
04:59How did this happen?
05:00I got out of bed.
05:02What?
05:03I got out of bed, okay?
05:05So I started making some educational videos.
05:08I have a rare form of brittle bone disease known as hypophosphatasia.
05:11Most people do respond pretty positively and naturally some people ask about brittle bone
05:16disease and want to know more information and so I do like to respond to those comments
05:21because I mean, I have no problem with those comments.
05:24But then there's a lot of people who have various misconceptions or are just uninformed
05:29and are rude about that.
05:31One of which is, just drink some milk, have you tried cheese, fake, you don't have blue
05:37eyes.
05:38I had to go in and explain that I don't know which brittle bone disease you're referring
05:43to.
05:44So yeah, that was fun.
05:45It doesn't really necessarily bother me anymore but I don't appreciate the misinformation
05:51being spread because that's harmful to anyone with HPP hearing it.
05:57People who have HPP, they all walk on their toes and people have been making fun of me
06:02for doing that my entire life.
06:05So I've decided, screw the haters, I'll just wear heels so they can't yell at me.
06:09Hey yo ma, are you ready to go?
06:15So today I'm going to be going to physical therapy to continue working on my arm.
06:22I've only really had, I'm going to say maybe like four sessions.
06:26So let's just start with the ulnar nerve effects.
06:29We're definitely just trying to work on making sure that the area that was decompressed has
06:34feeling again.
06:35Making sure I can move the fingers properly like everyone else can.
06:39So these are nerve glides, they're just gliding the nerve through where she had surgery.
06:45So that nerve is not going to get caught on scar tissue or any of the swelling that's
06:49going on after the surgery.
06:51I broke my elbow 15 years ago and they didn't fix it properly and somehow, someway this
06:57apparently happened.
06:58Is that surprising to you?
07:00Not necessarily.
07:01I mean they probably just didn't put it in the correct position which would have put
07:05more pressure on that nerve over time.
07:08More sore?
07:09Achy?
07:10In that moment?
07:11Sensitive.
07:12Yeah.
07:13It's definitely like sore.
07:16So it's working the muscles nice and obviously I'd like to get things working again.
07:21We're on week three at this point, so that's probably about three more weeks.
07:25Have a good weekend, we'll see you next week.
07:31Every disability is different and so everybody can take something different from this story.
07:36I think they should try to live as normal of a life as they can in spite of their disability.
07:45Despite having this, she is just as capable.
07:48Nothing's going to stop her as long as she keeps going forward.
07:52I know she can do it because she's strong.
07:54A little ironic.
07:59I refuse to let this one part of me and my life define everything about me.
08:07I'm more than just that and everyone else is too.
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