Episode 6 – An Adolescent Experience of Living with a Bleeding Disorder – Descript
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.
Transcript
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.