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Episode 7 - A Conversation with Wendy Quinn, President of CHS
Episode 719th December 2023 • The Flow • Heroixx
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Join us as we talk with Wendy Quinn, President of Canadian Hemophilia Society, about being a mother of a child with hemophilia and an advocate for all those with bleeding disorders. We explore Wendy's various roles as a primary care provider and some potential suggestions for navigating primary care provider visits.

Transcripts

Speaker:

Okay, so welcome to this

episode of The Flow.

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I'm really excited by our guests

that we have on the episode today.

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Today we have Wendy Quinn joining us.

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Wendy is a mother of a son

with severe hemophilia A.

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Wendy has been the volunteer chapter

for hemophilia Saskatchewan for over

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10 years and is a concurrent board

member for the Canadian Hemophilia

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Society and the current president.

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Professionally, Wendy is a

primary nurse practitioner with

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a specialty in adult gerontology.

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And today she works predominantly

in the First Nations community with

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the focus on prenatal women's health

and chronic disease management.

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So welcome, Wendy.

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We're glad to have you on the episode Rev.

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Thank you so much, Natalie.

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Thank you for having me.

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This is a complete privilege and

honor to be a guest on your show.

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Excellent.

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Excellent.

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So, how about we start with, can you

start by telling us your experience

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in the bleeding disorder community?

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So I think my experience

comes authentically.

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Bleeding disorders was

completely not in my world.

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It had, it occurred when my son was born

and he was born with severe hemophilia,

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a, he was a, genetic mutation, and it

was not in our family prior to his birth.

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So it was a new discovery for us,

a new world for us, a world of

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quite a lot of trepidation fear.

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Unknown situation that really provoked

action and created a new world.

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And in many, many, many ways, so yeah,

so that's how, that's how we, I entered

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into the world of bleeding disorders

when it first came upon us, it was

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about my son, truly, truly was about

my son, and so at the time, I took him

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on, took it on, took everything on as a

sole artist, and a sole artist, meaning

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that I had the health care background.

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I began to understand that his

bleeding disorders very well.

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Obviously, I studied it even more

extensively now that my son had it.

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So that before I became an expert.

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For my son, therefore, I

thought I could do it all.

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So I was very keen on, on not having him

be defined by his bleeding disorders.

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I was very keen on not having.

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to be a part of any sort of group or

any kind of setting that was dedicated

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to bleeding disorders because I

thought we are not bleeding disorders.

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We are a family that has a

child with a bleeding disorders,

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but that will not define us.

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So I was on a very high horse at

the beginning of this whole venture.

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And it was only my son

who taught me different.

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It was my son that made me humble,

and he came to me as a six year old

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child with big tears in his eyes,

and he said, Mom, am I the only

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person in the world with hemophilia?

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And that's when I, my whole, my heart

crumbled, and I went, what have I done?

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What have I done?

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And it was that day that I called

the Haemophilia Saskatchewan chapter.

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I said is there anything that I

can do to give my son an experience

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where he feels like he's not the only

person in this world with Haemophilia.

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They invited me in, open arms,

Like a big old family, and I mean,

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because of my background, because

of my health care background, they

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really wanted me to join the board.

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And so then I did.

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And so I joined the board as a, as a

person that was, had no board experience.

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And then really elevated to a

level that, that they needed

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a leadership type of person.

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I'M not a board person, I never was, but I

knew that it was a call to action for me.

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And there was a need, and there was

people who were open arms, welcome me.

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Now I must return the favor,

or I must do my part as well.

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So with that in mind, I gave it my all.

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I learned how to be a board member.

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I learned how to lead chapter from

for many years and along that.

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Time as well.

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I also was on the CHS board and eventually

was on there long enough so that they

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started to say, okay, she might know

something because she's been here

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long enough, she should know something

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So then she.

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I think process of, Oh my God,

she's been here the longest.

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Just let's get her in the position.

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No I learned it very, I think when I

started on the board, I knew nothing.

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And from the great leaders that

we've, that I've come up or had the

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opportunity and the privilege to

work alongside of, I learned it.

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Every step of this journey has been

taught to me by those who have walked the

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walk, Natalie, and I feel incredibly like

again, blessed to have this experience

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now as I'm sitting in the role myself

and have been for the last two and a half

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years, I go, wow, I remember sitting in

this position when I first joined the

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CHS board and going, How do I get to be

like her and that person I was pointing

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to was the president at the time, and

I thought, wow, you know, what to take.

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And so that's my journey with

the bleeding disorders community.

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I always go back to the fact

though that I am a mother of

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a son with severe hemophilia.

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And that was the reason why I'm here.

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And that started this whole.

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leading disorders journey for myself.

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What a heartwarming story, Wendy.

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I think that's just a really special

moment that you're sharing with us

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about when your son came to you and you

made that realization of, oh my gosh,

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I have to become part of something

bigger so that he has those experiences.

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And knows that he's not alone and

knows that he's not the only one.

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What a beautiful story.

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And what an amazing message

to others in the community.

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Considering, as you said, you started out

with no board experience at all and just

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out of passion and the desire to learn and

the desire to be a part of the community.

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Manage to find your way in a current

president position for the board

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of the Canadian Hemophilia Society.

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Like what, what a great message for

anyone out there who thinks, oh, you

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know, I don't have any board experience.

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I can't be part of that.

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You can, you can do that, and you can be

part of those types of bigger changes even

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if you come in without any experience.

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So I, I love.

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Sharing that story that's such a

great story, both from your personal

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and even your work in the board.

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It's it's such an amazing

journey and story to share.

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Wendy, you and I have talked about our

mutual interest in menstruators and

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women living with bleeding disorders.

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So in this journey of yours, when did

that start to become an interest for you?

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If I was not in the position as I

am professionally, Natalie, and I'm

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just going to be honest with you.

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If I was not in the professional

role that I have right now, I may

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not have been such an advocate.

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I do not experience

bleeding myself as a woman.

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And I have my son, so I can see how

many people get siloed into their

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own experiences and really have their

eyes sort of not aware or not open

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to what other people experience.

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But because and this is where

my two worlds are colliding.

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I see women in practice.

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I see I am a primary care provider.

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So I see that woman that will come

in with heavy menstrual bleeding.

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I see that woman that would have like,

bruises and said, you know, my mother.

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used to have really heavy periods,

no one ever listened to her.

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And I've had heavy periods since

I was, you know, blah, blah, blah.

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And I'm like, all of a

sudden, my wheels are turning.

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So I've seen this in

professional practice.

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And so women's health to me is

a very, very important because

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women come to me for, for care.

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And All women.

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So it's an all encompassing it's an all

encompassing experience, and a large

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part of why a woman presents sometimes is

because of menstrual issues, because of

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pelvic pain, because of, painful periods.

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I think on the run of a week, if I

was going to say how, if I get a, a,

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a list of people who are booked with

me, and if it's a woman, it's usually

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because they have pelvic pain and it

has something to do with, with bleeding

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or not with bleeding, but that's

what that's the reality that I see.

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Now, because I'm a woman, and I'm a

provider, and I'm a nurse practitioner,

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those are all the three reasons

why women want to come and see me.

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So I attract women into practice.

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You know what I mean?

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All of those reasons will make

a woman want to see me and

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feel comfortable to see me.

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And so then I get, I get, I'm privileged

to be able to serve these women.

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And so, with my knowledge

of bleeding disorders.

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From my role in the Canadian Haemophilia

Society and, and my own son and, and our

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haematologist and all of those wonderful

people who have helped educate me.

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I now take that education that

I would never have known and

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learned had I not had that role.

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And I now transfer it directly to

the patients that I see directly.

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And I say, you know what?

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Here's.

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Here's what this could be.

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Here's how we can treat.

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Here's where you can go.

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Here are the resources.

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And I go, wow, you came

to me with this problem.

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And I have so much knowledge about it.

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And I'm thinking, it's your lucky day.

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It's your lucky day.

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You know, and that's what I feel every

time some, a woman presents to me with,

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with bleeding and because of, of my

extra knowledge that I have in that area.

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So it's interesting that you bring

up your extra knowledge and, and sort

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of this background that you bring

to the patients that you work with.

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And I'm wondering as a nurse practitioner

with your experience, with all of the

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knowledge that you bring, we know that.

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The delay in diagnosis for

women with bleeding disorders

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is an average of 16 years delay.

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So I'm wondering if you have any thoughts

as a nurse practitioner around, you

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know, around that delayed diagnosis

or, or those that are undiagnosed.

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Every single time I have had exposure

to these statistics and, The stories

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that have come from the women in the

bleeding disorders community who have

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seen their providers, the primary care

providers have not been believed in,

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in their story who have suffered for a

long time, I always go, first of all,

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I need to make sure that I'm listening

and that as a primary care provider

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that I am making sure that I don't

Minimize any of the story that they are

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telling me, and then I think to myself.

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You know, it would be wonderful if I

could include all of the primary care

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providers who hear the same story

that I hear and approach people and

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approach our women the way that I

would with the knowledge that I have.

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Is that gonna happen?

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I don't think so, because

I'm, that's the reality is not

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going to allow that to happen.

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So I really like the idea of, sort

of a consistent approach to a problem

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that presents, meaning that there is

when you see this, this is what you do.

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If you need to figure out a test to

order for Von Willebrand's disease,

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this is the test that you were like.

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I wanted to see a standardized approach

to recognizing bleeding that is abnormal.

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And I know those tools exist in a lot of

the resources That I've been presented

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with at all of our conferences, but

they're not universal and they're not

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out there and they're not being used.

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So creating the avenues for primary

care providers to know that these tools

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exist and getting them in a place where.

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tHey're not just another app or

just not another place to Google.

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It's actually, in a portal that is

evidence based that providers would trust

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that is backed up, by data, by research,

by science, the science,, we need a

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spot where, a provider would go when

they're stuck and don't know what to do,

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and then they find that resource there.

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That's the only way that I

see a consistent message and

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approach to women in bleeding.

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I that's the only place that I could

see that working across the board for

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primary care providers, because being on

Google and going and finding things, it's

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such, I mean, you know, we all do it,

but to actually know what the best app

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is or what the best, you know, algorithm

is what, there's no, we don't have

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time as primary care to tease that out.

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But if we had it, if it wasn't a place,

a universal place where those, if it was

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in a universal place where it was a high

rated, portal of information and they say,

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oh, here it is, then we'd have a lot more

buy in from our primary care providers.

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Do I know a place like that?

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Not really, but I do.

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We use a few resources that are

very, very universal and very trusted

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by the healthcare professionals.

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And I think if we can tap into those

areas and tap into those avenues,

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I think we would have something.

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But that's just my opinion.

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No, thank you.

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Thank you.

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That's really that's that's a really

good point about we do have the tools.

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There are lots of tools that

are available to be utilized.

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And yet they're not really being utilized

to help kind of bridge this gap for.

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Undiagnosed women or women that have a

very big significant delay in diagnosis.

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So any thoughts, and if you

don't, that's totally okay.

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But any thoughts on why this portal

or this access to this universal.

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Tool.

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It's become so hard for

this particular topic.

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Any, any thoughts on that?

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I don't, I don't know if we've

even tried to centralize sort

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of this kind of an access.

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I just know that when I use resources

and one of my resources that I use, I

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don't want to name it because I don't

think we should be plugging resources

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on, but there's a very trusted resource

that many healthcare professionals use.

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And it's one stop shop.

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Really we can Google, you

can do this, you can do that.

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But when you go to this specific

one, you know that it is high caliber

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information and, it is very trustworthy.

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And so when you, if the

provider isn't going.

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To your app, then maybe place your

app where the provider would go.

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That's the way I see it.

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If you're not getting uptake from

wonderful resource that you have, then

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make your resource place it in a place

where a provider would go where they

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would see it, you know, as opposed to

waiting for that provider to come to you.

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And that's the way I think it's the

angle and the strategy of how we do it.

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you kind of have to jump into a Primary

care providers head, the amount of time

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a person has at the patient's bedside,

or when they come into office, the time

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factor, the engagement factor, the amount

of the kind of appointment that the

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person is going for all of those things

are really important to factor in and.

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I was on a webinar, a CME, actually,

and it was on actually, I think I

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talked to you about this, Natalie, it

was about bleeding, abnormal bleeding.

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And I thought, oh, this will be great.

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Yes, there was and it wasn't what I was.

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I thought it was a preventive thing

is actually across the country.

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So there was not a opportunity to ask

and get more specific questions about.

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You know, certain things, but I

thought, okay, now we're getting into

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the reasons for abnormal bleeding.

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And I was like sitting on the edge of

my seat and the presenter was excellent.

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He was a hematologist.

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He mentioned bleeding

disorders for just one second.

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Like, it was hardly even a mention.

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It was at the end and it was

like all of the other things

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that cause abnormal bleeding.

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And then, and then bleeding

disorders should be ruled out.

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Next slide.

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You know what I mean?

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That was it., if hematology is giving

bleeding disorders such a small

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piece or a small, you know, focus.

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So how do we expect primary care

providers to give it anymore?

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You know what I mean?

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Right.

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It just led me to the thought of

like, You know, why is that happening?

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Why is, why is our bleeding

disorders being talked about?

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Am I just got my bleeding

disorders eyeballs on all the time?

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And that anything that seems

bleeding to me needs to be like,

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okay, is that a bleeding disorder?

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You know, so I might be heightened

in my sort of reception of

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information because of my experience.

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And, but I run into this.

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All the time, and then

I tell you the truth.

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I don't have an answer.

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Natalie.

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I really, really don't

have an answer, right?

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That's what I say.

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If they're not coming to us and we

must go to them, you know, and place

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this in a, in a, algorithm, like,

you know, how many algorithms are

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out there Natalie for how to manage.

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Any condition where you

start like you see a symptom.

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This is what is a yes or no.

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You go.

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Yes, you go this way.

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No, there's you go this way.

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So somewhere in the algorithm, we

could place a if you see bleeding,

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make sure you delve into this.

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Here is a resource.

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Find out where that and place ourselves

into these into certain evidence

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based algorithms where we're actually

going to be Our resource or our

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guidance will be, will be used and

the uptake will be right in, because

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that's where they go to search.

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They go to search to find out

what to do, and that's where the

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learning happens at that moment.

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It's like a point of care learning

providers only have time for.

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So you make a really interesting

point, Wendy, when you say, you

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know, you're heightened, you're

aware, you you are in it, you know.

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So when you have patients come

in and you hear things, you're

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peaked, you know what to look for.

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But you also have acknowledged that

lots of primary care providers don't.

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And you brought up that webinar

where, you know, if you're giving

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one little bit of attention.

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To bleeding disorders, and

you're just going right by it.

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Like, how, how are we going to

expect everybody like all primary

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care providers to do that?

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So what would you do?

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You have any suggestions

for patients that might.

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go in to their primary care provider,

but their prime, let's say their

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primary care provider isn't as well

versed on this topic as you are.

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Do you have any suggestions for the

patients how they might advocate

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for themselves if they have bleeding

concerns or if they maybe think,

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hey, I, I don't know any different,

but my period seems really heavy

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or it's impacting my life, right?

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Do you have any suggestions how they would

advocate to their primary care provider?

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I think what really, really helps

is, and this is going to sound really

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quite simple, if a person is going

in for a specific reason, And the

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provider has no clue of why they're

being seen, you say, check up.

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Okay.

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And this makes a difference.

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You go in and say, I'm going to

have a checkup with the doctor.

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You don't want to tell the

reception what you're going in for.

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If the person says, I'm

having heavy mental bleeding.

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Tell the reception tell whoever saying

it's about bleeding then it already

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hones that provider into all the

steps because it's amazing how much a

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provider will do beforehand when they

see a patient coming in and going.

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Oh, this is a pack.

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Oh, this is a.

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complete.

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Oh, this is this.

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Oh, this and they they size up their day.

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They know what they're going to go.

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And if they say someone coming in

with abnormal bleeding, okay, they're

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already thinking all the things

that they're going to be seeing and

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what they might hear and whatever.

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So they're already prepping themselves

mentally for what's going to be happening.

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The person comes in and that person

with abnormal bleeding has booked

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themselves in and it's a checkup.

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That could be anything.

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And then anything could be like,

okay, can you tell me why you're here?

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And then it's, it's,

and I'm not saying that.

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That a patient has the has

responsibility to make their physicians

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or their NPS days a better day.

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Okay, that's not their responsibility,

but if you're going to work the system,

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make sure that you're placed well, don't

go in with:

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bring up bleeding as your last resort.

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thing.

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B, if it's important to you, make

that your visit and make it sure

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that you're telling the physician

beforehand that is what you're here for.

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And you might get a better sort of

openness to what you're hearing.

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Then they'll hone right

in to the bleeding.

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Right.

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If you're, if you have, I would say to any

patient, if they have Abnormal bleeding.

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Everybody Googles, right?

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Everybody checks out what's, you know,

and nobody wants to hear, well, I, when

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I did my research, well, that's the, that

almost puts people in a, in an irritation.

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Like providers in an irritation.

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What research are you talking about?

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Because you, you searched it on Google,

that is not called research, but whatever.

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But it's an irritate, and it'll

be a resistance sort of thing.

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Okay, the person comes with all

this, but you say, you know what?

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I have a period app.

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Or even using any of the resources

that if they If they came in with

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bleeding, have them look at the

tool, use the tool first, and then

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present the tool and to that provider.

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Do you know how wonderful it is when

I hear a woman come in and say, I have

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a tool on my, you have a period too?

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I am so happy to hear, because it is.

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The, the history that we have to get from

somebody's memory is really difficult.

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It is so difficult for them to remember

when their period was, how long it

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lasted, what was their, you know, heavy

flow, was it, was it pain, like nothing.

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But if I, and then at the end, if I do

have that struggle with trying to get that

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information, I say, hey, you know what,

there are these apps that you can use.

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You have your phone.

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Let me show you.

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Try this one out.

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This is the one I have.

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This is a great one.

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You know what I mean, whatever it is,

and then I can help them point them out.

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So it's, it's really, really,

um, it sounds, it sounds like

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these are the semantics of an

appointment with your physician,

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but you want to optimize your time.

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As much as you can.

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You don't want to waste time.

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You want to get right

to the heart of things.

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What's what's going on?

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Be prepared yourself to

be asked these questions.

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Know the questions yourself

so that you can give the best.

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And I really, really feel having the

resource beforehand that even if your

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provider is not aware of the resource,

they will be so welcoming to know

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that you've got yourself organized and

you can answer their questions and be

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really well good with your history.

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That's Going to put you way ahead and

be a better advocate for yourself.

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That's a really a really great point.

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And I think I will take the opportunity

to anyone who's listening just

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to point out that if you go to

Haemophilia Ontario's website, HeroX.

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ca, so H E R O I X X dot C A, on the home

page, you will actually see a tool that

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does measure bleeding called Self batt,

and that's on the homepage of hero x.ca.

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Or you could go directly to let's talk

period.ca and the self batt is on the

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homepage of either of those websites.

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And that really is a good

point, Wendy, because that is

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a tool that actually takes.

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like two to three minutes to just fill

in and it gives you a score that you

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could actually take into your primary

care provider and say, Hey, this

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is, this is what I got as a score.

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Can we talk about this?

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So I, I really liked that

point about going in with, all

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right, this is what I've done.

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This is what I know.

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Can we kind of talk about this

and kind of giving them a heads up

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:

about what you're coming in for.

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:

So thank you for those suggestions.

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Anything else you want

to share with us today?

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This has been really informative to

me because I think both informative

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as from the patient perspective,

but also really informative from an

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organizational side of things, even as

myself as a staff of hemophilia Ontario.

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So I found this really, really great.

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So is there anything else

you want to share today?

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Yes, you know Natalie, I think, I, I

think when we first talked in at, at, at

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our our rendezvous and at the wonderful

presentation on our women and bleeding

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:

disorders session that we had there,

what really hit me hard was there was so

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much there was just, just a hunger for

information and a need for for service.

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I found myself wearing two hats, um,

at all times, I found myself being

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that I have the ability to read.

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I have the ability to resource

my patients with with all of the

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information I'm, I'm getting here.

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I'm also in this leadership

role with CHS that I have the

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ability to advocate for, for.

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:

Bleed women who bleed that are are

still not diagnosed properly and

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and work as a within our mission.

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At CHS to make sure that we are

capturing our data and capturing

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:

our women who are out there.

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So there's so many facets of how of

of of just in me and I thought thank

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:

goodness that that I did jump into

this and I just see this as service

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:

but I'm going here's me with with with.

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That's happened to be a nurse

practitioner and happened to have

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:

a son with severe hemophilia.

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What a great combination because

now I've been able to sort of put

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myself, in a situation where I could.

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Really, really be beneficial

both my son and to the community.

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But what I want to tell everybody is you

don't have to be a nurse practitioner.

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You don't have to be

somebody on the board.

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You said this Natalie in the beginning or

have, you know, a lot of that experience.

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You just have to believe in the cause.

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You have to believe in something that

is really, really important to you.

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:

And you don't give up.

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And then all of a sudden, the pieces

will fall into place and the advocacy

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:

will come from such a deep level that

you could move mountains and you may

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be a nurse practitioner, you may be a a

business person, you may be a person that

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is really, really good with, working with

customers service areas, you have skills,

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you have certain traits that really fit

into the passion that you are behind.

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Then you take those skills and you just

apply it to your passion and then you go

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forward and with your best foot forward.

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And that's what makes.

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An organization great.

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Okay.

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It's not, it's not anything.

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It's about people who believe in

the mission and they have a passion

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and they're willing to learn and

they're willing to bring their best

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:

selves and their best skills and

their best traits forward to fill the

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need of that organization's mission.

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We need you is the message.

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:

Oh, thank you so much, Wendy.

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:

It's been such a pleasure having

you on this podcast today and

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:

doing this episode with me.

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I feel like I've learned so much

and very, very inspirational.

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:

So I just want to say a really big

thank you for being here today.

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Natalie, I am so honored that you even

considered having me on your podcast.

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, I love speaking of, the work that

we do in CHS, but I also love to

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share the journey and give people

hope that, that, you know, things

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:

are getting better and life is not.

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:

It's dismal and we've got so

much on the horizon right now.

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:

So having the opportunity to share this

with you today and, and share my story

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:

and hopefully inspire others to follow

their, their personal journeys and make

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a positive out of whatever they can.

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Well said.

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:

Thank you.

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