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Episode 6 - An Adolescent Experience of Living with a Bleeding Disorder
Episode 627th September 2023 • The Flow • Heroixx
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Join us as we hear from an adolescent on her experience of living with a bleeding disorder as a teen.

Please note - Nothing that is shared in this episode should be interpreted as medical advice.

Transcripts

Speaker:

Okay, and welcome to

this episode of The Flow.

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I'm very excited to

welcome our guest, Hannah.

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Hannah is a 16 year old adolescent

living with a bleeding disorder.

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So welcome.

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Thanks for joining me.

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Thank you so much for having me.

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This has been something that I've

wanted to do for a long time.

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Excellent.

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Excellent.

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Okay, so why don't we start with just

a question about remaining anonymous.

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Why did you choose to

remain anonymous today?

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I think that my story to me is so personal

and I decided to remain anonymous because

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I do wanna share my story and help other

teens, but I wanna do it in a way where

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I feel like my privacy is respected.

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I can share more because I know that

my identity is, is just for me and

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I'm doing this for other people.

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Mm-hmm.

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Thank you and thanks again for being here.

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I think it will mean a lot to others,

16 year olds or teens to hear a

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story and be able to relate to that.

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And I think everybody can relate who

maybe has a bleeding disorder to wanting.

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In some ways to protect their

personal privacy, but still share a

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story that's meaningful to others.

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So thank you for that.

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Yeah, for sure.

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So maybe let's begin by telling me what

is your bleeding disorder diagnosis?

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I have vulnerable brands

and I have type two.

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Okay, thanks.

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And when and how were you diagnosed?

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I was diagnosed as soon as I was born

because I have two older brothers and

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my dad who all have vulnerable brands,

type two, so they knew to test me

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for it, but they found it in my dad.

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When my mom was actually studying in

med school and they started teaching

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about bleeding disorder and the

symptoms that they were explaining

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were very similar to stuff that my

dad was dealing with at the time.

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And my mom asked him to get tested

and it turned out that he did have

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Vulner brand and no one in his family

knew it's obviously, so they all

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got tested and figured that out.

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But yeah, so.

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That's how they figured out that my dad

had it and his whole family, and it was

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passed down to me and my two brothers.

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It's such an amazing piece of information

I think because so often we hear that.

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Primary care providers can miss

diagnosis, and I, I just think that

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it's so wonderful that your mom

caught that and actually advocated for

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your dad to get tested and then that

information was shared with his family.

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And then how nice for you.

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And your family to start out at least

knowing that this diagnosis was there

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and, and maybe what to do, how to

treat, how to, how to live with that

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and, and just have that information.

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I, I think that's a

really remarkable story.

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And I'm, I'm especially grateful to it

because when I started to have issues and

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when my journey like started to progress,

we knew mostly where it was coming from.

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So it made finding a solution for me

a lot easier, which was definitely a

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benefit that many people don't have.

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So you had already knew that you had.

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This bleeding disorder.

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So can you think of a time where

maybe an issue came up and even with

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bleeding and you thought, okay, we

know this is the bleeding disorder,

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so we know what to do with this.

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Like maybe a first time at something.

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Right.

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So I was out one time and it

was at the beginning where I

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just started menstruating and.

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I didn't really know what was going on.

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It was very unusual and what had happened

was really surprising to me, and I was,

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it was really heavy and I was shocked,

but I came home that night and my mom had

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known right away to give Meran examined

acid because it had already been given.

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To my brothers and to me for

previous stuff, like really bad

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bruises and it was written on

our medical alerts and et cetera.

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So that was something that I feel like

was towards the beginning, before I

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had found a real solution that I only

got the benefit of solving that issue

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because I already knew my diagnosis.

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That's a great example because I think

I have heard from others that that first

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menstruation can be very intense for some.

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Mm-hmm.

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And having that knowledge ahead of

time sounds like it was really helpful.

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Yeah, for sure.

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Yeah, it was very beneficial.

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Wonderful.

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And what have been some of your

experiences that you could share with

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our listeners about living with a

bleeding disorder as an adolescent?

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I've actually, I found it quite hard

being a teenager with a bleeding disorder

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because you're always surrounded by a

lot of people who really don't understand

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what you're going through, even if

they try to, it's not something you

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really know until you experience it.

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And this kind of issue with menstruation.

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It's not really discussed,

especially with a bleeding disorder.

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It's so minute in our society

that it's not well known.

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So like as an example, one of the

things that I experienced that I was

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really upset about was that I was in

gym class and I really was not feeling

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well because it was a really heavy day

for me and I could not participate.

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I was in really bad pain and my

teacher looked at me and she said, I'm

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a phys ed teacher, and I know that.

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Exercise always makes menstruation

better, so stop using that excuse.

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Mm-hmm.

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And I even explained to her how my

situation was unique and that that

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mindset didn't apply to me, but it

did not seem to shift her perspective.

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And I was really shocked and disappointed

that the woman who was responsible

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for teaching young girls about how.

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People's bodies react differently

to menstruation and puberty.

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Didn't even know what I had going

on and didn't respect what I wanted

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or the boundaries that I, that

I felt like I needed to put up

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because of my bleeding disorder.

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And she was willing to dismiss my issue.

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And that was just a time

where it was just mind.

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My mind was open to the

fact that this issue was.

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It's so small for people that don't

know about it, and it really deeply

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affects people and I think it should be

more well known and more people should,

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it should be educated to more people.

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So stuff like this doesn't happen.

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And did the school know that

you had a bleeding disorder?

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Yeah, I had.

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I had to.

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I had told my teacher and

she had known because.

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It was really bad at a point for me

that I had to take time off from school.

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Mm-hmm.

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And I specifically reached out to her

thinking that she would be a teacher

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that I could lean on for support

because of the class that she teaches.

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She teaches health class.

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Mm-hmm.

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But unfortunately that was, I was really

sad to see that that was not the case.

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Mm.

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I'm sorry that that happened.

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'cause that must have been very

shocking and very disappointing.

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Yeah.

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Yeah.

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It really was.

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You really do expect a little bit more

support, especially when you've clearly

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articulated what your situation is and

this teacher had known ahead of time.

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Mm-hmm.

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Any other experiences that you've

encountered that you, that, of living with

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a bleeding disorder that comes to mind

for you that's maybe a bit unique or from,

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from others without a bleeding disorder?

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Well, actually I did have a positive

experience with one of my teachers.

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I was, like I said, I was dealing with

a really difficult time and my school

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was quad metered, which meant that

our classes were in two hour shifts,

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so there was, at the beginning of the

year, I asked the teacher to go to the

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bathroom every day because we had the

same class every day for two hours and.

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As someone who was mentioning,

I couldn't sit in that class for

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two hours without being worried

and not going to the washroom.

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So he got frustrated with me and he

thought I was bored disrespectful

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because I kept leaving the class and

I apparently wasn't paying attention.

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But that really wasn't the case.

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And I did reach out to him with the help

of my mom and I explained my situation

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and however hard that was to open up

to my teacher, it really was beneficial

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to me because he understood from that

point on, and he was very respectful and

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very kind of what I needed and, and he

tried his best to be accommodating even

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though it wasn't something he could fully

comprehend because he doesn't menstruate

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and he doesn't understand the implications

of the bleeding disorder that I have.

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Right.

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Right.

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It's nice that you had another experience

where at least if he couldn't understand,

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he was willing to be supportive of that.

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Right.

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Yeah.

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That's like to counteract.

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To counteract the bad.

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Yes, yes, exactly.

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It's nice to have a little

bit of a balance there.

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Yeah.

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And what about with friends where

you, have you been able to share

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your experiences with friends?

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Do friends understand?

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I think friends try their best.

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But definitely my closest friends

know because it is a health concern.

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So God forbid anything happens to me,

they will know what to say because it's

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obviously having bleeding disorder spans

further than just menstruation issues.

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But it definitely is really

hard opening up to people.

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Some people think it's weird and they

don't know how to react or what to say.

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But I'm really lucky where I found

friends that really do their best

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to support me and to help me and

just try their best to understand.

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So especially during the time where

I wasn't in school, I had to explain

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to my friends why I wasn't there.

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And some really stepped up and took

that as an opportunity to really

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help me out with my workload and

gimme all the support they could.

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And I definitely appreciated that

and I felt very supported and heard.

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Hmm.

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That's wonderful.

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Wonderful.

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And I think it sounds so beneficial to

have almost that core group that really

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is there to help support, even if they

can't understand, help out when they can.

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And I like what you pointed out,

even that you've equipped them with

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how to help if something were to.

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Happen that you would

need their assistance.

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Yeah.

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Yeah.

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And I, I think that's, I

think that's really neat.

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How, so did you just sort of walk

them through, here's what you do,

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how, how did you know how to do that?

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So I explained to them,

what my medical meant..

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Mm-hmm.

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And I also do have a factor first card.

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In my backpack that the hospital

has given to me, that just explains

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more in detail about my condition

and treatment and et cetera.

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So my really close friends

know where that is.

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But I'm more just new because I could

tell that this, for me, this isn't an

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issue that I wanted to take lightly.

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And if something happened, I wanted to

know that I was prepared and I prepared

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the people in my surroundings to

properly get me the help that I needed.

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Such great advice in terms of having

those core friends know what the a

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medical alert means, where is it located?

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Because there's so many now and

they go in different places.

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Right.

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And I actually, I really do

love my medical alert because

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it's hidden on my bracelet.

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So it looks like a regular piece

of jewelry with a nice engraving.

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And I think that even if

you don't want people.

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To know what you have going on,

it's still best to equip yourself.

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So getting a medical or was kind of

my first step because a lot of people

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don't even notice it, which I think

is great that you have it on yourself

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for protection and it's more something

that you can do just for yourself.

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Right, right.

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That's great.

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And have you used any

apps around tracking.

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Menstruation.

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I know for example, there was a new

app that just came out called We

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Thrive that is actually specific for

adolescents with bleeding disorders.

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Like have you ever tried I know years

ago there was the suggestion of carrying

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around, I think they called it a

period journal, years and years ago.

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But of course we've gone away

from paper journals in this way.

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Have you tried any of the apps

out there that help track or.

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Yeah, I actually really liked the

health app, just the regular health

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app that comes with your Apple phone.

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Okay.

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And I tracked, it's really easy for me

because you can track your medications

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in it as well as, Your menstruation.

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So if you bled or spotted, and if it

was light, heavy, or medium, and your

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symptoms that you experienced that day,

and it gives you a really big variety,

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which I really appreciated, and you can

just check them off, which is nice, fast,

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and easy, and it stores them up for you.

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And I really did like that.

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I did also try, what's it called, flow.

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I think so.

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I think so.

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I did try that one, but I didn't enjoy

it as much and I found that there was

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just too much going on in that ad for me.

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But the really important details that

I would get from doctors or specific

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from that day would go in a note that

I had titled special Info about Me.

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And did you find it easier when you

were going to your appointments to just

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kind of have that information ready?

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Definitely because they obviously ask

you how long you've been bleeding and

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what, like what severity your bleeding

is, and I found it really easy to have

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it on hand so we could just cut straight

to the chase and also writing down

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solutions and what I should be doing.

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Was really helpful.

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And also just to look back on that,

if I ever need any comfort, it really

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helps me know that if something goes

wrong again, I know what to do and I

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had the support to know what to do.

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So that was all really helpful.

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Actually, I did find it helpful.

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Yeah.

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Okay.

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Okay, great.

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That's good to know.

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'cause I think others maybe

sometimes wonder like, how,

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how will I keep track of this?

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Is it even worth it?

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Where do I keep track of this?

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Does it make a difference

once I get to the doctor?

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Definitely makes a difference

and it's definitely worth it.

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Okay.

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Okay.

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Thank you.

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So what would you want

others your age to know?

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I think it's really important to

understand that even though to others,

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they may think the topic is taboo and

we shouldn't talk about it, especially

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in the settings that teens find

ourselves in, surrounded by people

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who you may think are judging you.

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Trust me when I say I

know what it feels like.

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And just because it's not spoken about

it doesn't mean you're the only one.

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Who's experiencing it and maybe you

sharing your story could help someone

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else, just like I'm trying to do.

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And if you're listening to this, you

should know that you're much luckier

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than I was because Heroic is such a great

resource and I really found it late in my

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journey, and I wished I found it earlier

because there's just amazing things

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that can help you feel less alone and.

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Even now that I know this portal

exists for women and girls

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like me, I feel so much better.

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And I feel like everything is just

getting better for women and for people

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who menstruate with similar issues.

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And I think that's just so important

that things only go up from

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here and the support continues.

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So even if you are struggling,

everyone around you is working

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to make it better for you.

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Thank you so much.

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Such good advice in terms of passing

on and sharing all of these things

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with others that might be listening.

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I think it really does make a

difference when we share our stories.

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It makes others feel they're not alone.

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It makes others go, yeah, I

know what that feels like.

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It happens to me.

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So I think, mm-hmm.

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It's just wonderful that you came on

today to share some of your story,

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share some of your experiences

and, and really be a part of that.

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So thank you so much.

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Is there anything else before we end today

that you would like listeners to know?

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I mean, even if you can't find someone

in your school that, or your friends that

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can help or support you, there is heroic.

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There are doctors.

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There are parents who hopefully can be

there for you to lean on and get support.

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So there will always be

someone there for you.

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And I think that's just so important to

remember someone who will do anything

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they can to understand and help you.

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So it's important not to forget that.

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Well, I really wanna thank you for

joining me today and sharing all of this

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really valuable experience that you have.

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Literally experienced and, and that you

were willing to come on and share and, and

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be so vulnerable in that space because all

of the things that you said earlier that

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sometimes it's not received well, people

don't understand sometimes the experiences

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don't go as well as we hope they would.

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So I just think it was very brave and

I thank you for being willing to share

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your experiences so that others can.

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Feel that sense of not being alone

and have that similar understanding.

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So a big, big, huge thanks

to you for joining me today.

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Yes.

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And thank you for providing me with this

space where I feel safe enough to do that.

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So that's also right back at you.

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Well, it's been wonderful having you.

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Yes.

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Thank you so much.

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