Join us as we talk with the President of Hemophilia Ontario about challenges for women and those with the potential to menstruate with bleeding disorders and how to get involved in the organization and the Board of Directors. This episode is in English only.

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

Okay, so today I'd like to welcome

everyone to this episode of the flow,

2

and I'm really happy to have our

special guest speaker here today.

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Today we have with us Cam Peters,

who is the president of our board

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of directors of Haemophilia Ontario.

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And Cam actually doesn't bring just

professional experience to the role,

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but he also has severe hemophilia A.

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So lots of investment

into our organization.

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So welcome, Cam.

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Really great to have you today.

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Thanks, Natalie.

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It's really exciting to be here today.

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I remember when HeroX and this podcast

and a lot of your work was just an idea.

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So it's pretty exciting to be here now,

actually live talking to you about it

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and it's just a credit to all the work

that you've done pushing forward this

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really important work for their community.

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Oh, thanks, Cam.

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That's great.

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So I have a couple of

questions for you today.

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So we'll just get started.

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So the first question I thought of

that I really thought would bring some

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great insight is, in your opinion,

what are the challenges that women and

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those with the potential to menstruate

with bleeding disorders actually face?

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I think if I can put it down to one word,

I would say that word is recognition.

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That's been an issue that's been going

on for decades, is women that, whose

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lives are impacted by bleeding disorders,

have always had an issue just getting

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recognized on any level, whether that be

within their interpersonal relationships,

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family, and of course, in health care and

getting those needs addressed properly.

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So, It really is about recognition from

my perspective and everything I've seen

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in my time in the context of the medical

system in particular, it's getting

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that recognition at the primary care

level, getting other family doctors

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who, of course, have busy practices and

many things they have to think about.

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However, those people having the right

skills, tools, abilities to recognize

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when things are not normal and when

there are interventions needed has just

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been a significant issue for a long

time and is still an issue that we're

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working on, you're working on right now.

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So, the recognition piece, especially

the primary care level, is just crucial.

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Yeah, I love that word.

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I love that word recognition.

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And I think that's really powerful.

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And I think that a lot of the members

of our community and beyond would agree

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that recognition continues to be a

challenge and continues to be something

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that we're all working towards in terms

of really having that conversation out

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there and that awareness out there at

all levels, as you said, whether it's

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a primary care provider, Or women and

menstruators out there with potential

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bleeding disorders that don't even know

they have it and just even creating

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that space to have that recognition.

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So I really appreciate that because I

think that's a really, really key word.

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And as President of Haemophilia

Ontario's Board of Directors, why

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are women and menstruators with

bleeding disorders important to you?

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There's two reasons that I can point to.

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Number one is that there's just been

so many people in my life, people

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that I met in the community that have

significant issues and complications

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from their bleeding disorders, whether

that's people in my family with iron

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deficiencies, going right up to other

women that have had significant.

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Issues in terms of pregnancies

and and there are some women with

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bleeding disorders, including

severe forms of on willow brands.

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I have significant joint arthropathies and

major joint issues, including replacement.

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So, the 1 side of it for me, personal,

it's just the personal part of people

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that I've known what I know, and

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all the people I know in the community

and the things I've learned so that's

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really important to me on a personal

level from an organizational perspective

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Women's bleeding disorders are important

for the work that I'm involved with

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and the guidance that I can help to

give within the organization Because

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we really need to move the ball forward

when it comes to on the ground care for

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women and people who are menstruate.

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That's crucial from my perspective.

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There's been lots of talk within

the medical system and our community

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organizations about these issues

going back for well over a decade.

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And that's all been well and good.

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But what I see is a real lack of making

a difference on the ground, taking the

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talk to action and trying to focus on

the larger public health care issue.

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So When it comes to our work at the, the

board level in hemophilia, Ontario, we

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need to start to work with the recognition

that, first of all, the broader women's

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bleeding disorder community is large,

especially when you factor in a condition

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like von willebrands, we're talking

about tens of thousands of people and von

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willebrands is an equal number of people

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5050 effect on both genders.

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So that group is large,

much larger than the group.

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We typically serve and

have served traditionally.

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So getting that mindset to our group,

making sure that the way that we program

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the way that we educate the way that

we are run organizations reflective of

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that and then just making sure as well

that all of our programming reflects

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the need to address that community.

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So, for example, we have

run a program for male.

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Caregivers called just the dads

for decades, very successful,

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longstanding program.

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And we realized that we had it was

called just the guys and we realized

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that we had a lot of girls, young girls,

teenage girls with dads who definitely

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could use, a positive environment

some guidance on how to deal with

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bleeding disorders for girls too.

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So we changed that to just the dads

and we've had fathers attend with their

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daughters there now for several years.

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All of our camp programming is

available to everyone with a bleeding

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disorder and I'll give another example.

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Our recent youth.

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Adventure and mentorship program aimed

at teenagers with bleeding disorders.

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We've had significant female

attendance there as well.

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So, from an organizational perspective,

it really is about just making sure that

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everything we do reflects the need to help

that community from planning to execution.

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Right and I liked how you framed

it in almost two different buckets

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in the sense of a personal piece of

it being important to you from what

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you've witnessed from a personal place.

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And for those that you care about

and and have seen sort of what that.

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Looks like in a lived experiential

way, and also from an organizational

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perspective about what that movement

really has to look like and how all

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of those components come together.

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So I, I really like how you touched on

the examples of all of those pieces.

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So thanks for that.

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That was really rich of an answer

in terms of the importance to you.

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And I think it's just so meaningful when

you have a board of directors that is

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invested, both on these sort of personal

and professional ways, because I think

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that it really brings a rich passion to

all of the desire and everything that

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we do at the organization and how to

move it forward and how to best serve.

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And how do we make sure that

we serve those that are in the

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community and can really benefit

from our community and beyond.

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And as you said, there's no shortage

of work to be done in the sense of even

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if we talk about VWD with it being sort

of just universal across the board, and

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all of those that are still even waiting

for a diagnosis or haven't even been

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alerted to a potential bleeding disorder.

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So thanks for that.

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Now, the next question so I'm going

to be careful with my language on this

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question, because I know that we're really

wanting to be inclusive in our language.

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But historically, bleeding disorders

have been associated with males and by

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males, I'm going to draw on cisgender

males, because that's the default.

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And when we think about the

history behind it we associate.

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Cisgender males with hemophilia,

and that's, that's been the ongoing

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understanding of bleeding disorders, but

so for the purposes of this question,

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I'm going to say, how do you think.

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men in the community, but I'm gonna,

add to that and say individuals.

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It could be anybody, but I chose the

word men just sort of for that default

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perspective of how there hasn't been

as much attention paid to women and

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menstruators with bleeding disorders.

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So with that in mind, I'm going to say,

how do you think Men in the community

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can support and advocate for women

and menstruators bleeding disorders,

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especially with that history of there

being that dismissed kind of approach.

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Of course, and I think that's totally

fair, and I've seen that history

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myself play out, and it's unfortunate.

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So, what I can say is that the most

important thing is just to listen.

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There's lots of women who are well

capable of speaking for themselves,

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and have some pretty heartbreaking, but

important stories to tell about their

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own experiences and lives, and From my

perspective, it's just important that we

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make space for those stories and that we

listen and to come back to what I said

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earlier to recognize the reality of those

situations there, we have this community

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where we have a lot of men that have

significant health issues because of their

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bleeding disorders and their hemophilia.

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That's reality.

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And I think sometimes

that leads to people.

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Men, when I say people thinking that,

you know, my condition is that much

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more serious and people that maybe

don't have it quite as bad as me aren't

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really worthy of being listened to,

cared for, advocated for, and supported.

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And that is part of the

reality of our community.

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So when I say listen to those people in

particular, I say, make sure that you make

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the space to listen and be empathetic.

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And understand that in some cases, it

won't necessarily be as significant

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in terms of the impacts as a man

that I've had, but that doesn't mean

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that it's not important and that

we shouldn't be recognizing those

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experiences and doing something about it.

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I really love the word listen.

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And I think that applies, you

know, again, we're using that

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language, but I think that applies

to everybody in the sense that.

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Listening has been an ongoing challenge.

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If we loop back to that very first

question around recognition, listen

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is another really great word in

terms of listening and appreciating

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what individuals are experiencing.

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And I also really like how you

drew attention to the comparison.

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And I think that's important.

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Probably been very problematic all along

the way about this comparison and this

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definition of severity and you touched

on that in the sense of we're not doing

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anyone any favors by comparing severity

because we know even just with recent

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literature that quality of life severity

comes into play and Kind of has to be

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factored into that for so many women

and menstruators living with bleeding

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disorders and what their quality of

life is and how that also impacts them.

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So I really appreciate how you brought

in that that comparison is not necessary.

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In support and advocacy and all of those

things that you can offer and and just

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the importance of listening and and I

would maybe add to that, even validating

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those experiences and that need for

treatment and good care and all of

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those things that come within the system

that sort of women and menstruators

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are continuously challenged with.

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So thanks for that.

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Really that those what that

highlighted and if I could just say,

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I think the concept of validating

is great and I'm glad you raised it.

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And that's the perfect way to put it.

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And that's what I think men

in the community need to do.

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You also mentioned quality of

life and for me personally,

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that is a significant issue.

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I don't think we should be treating

that as some sort of nebulous.

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Non medical consideration, which

unfortunately is sometimes is

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with a lot of the health care

providers that we deal with.

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Yes, but I believe it's

absolutely crucial.

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We can be alive and surviving with

what we're dealing with, but if

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our quality of life is poor, it is

going to have other impacts on us,

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including mental health impacts.

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Ultimately impact our ability to be

productive members of our families,

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our communities and a society.

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Absolutely.

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So quality of life is crucial

and especially for women

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with bleeding disorders.

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That's a big impact.

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And the reality of our society stays women

still have a lot of care responsibilities

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in the home for families and children.

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And when quality of life is impacted by

medical issues, like bleeding disorders,

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it can have a lot of impacts on people,

even within the family structure.

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So, in terms of validating those

experiences moving forward,

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looking at things we can do

to improve quality of life.

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Within the community within

our organization from my

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perspective is absolutely crucial.

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Yeah.

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Thanks for that.

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Because that that is so very true.

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If a menstruator isn't going to

maybe have an injury or something

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that's fatal, but if every month

they are dealing with losing a good

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week to week and a half out of.

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Regular living or quality of

life, or as you say, family life

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or work life or things like that.

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These are major impacts and and you're

right, haven't been given the same kind of

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attention or validation of what it means.

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So thanks for that.

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That's absolutely true.

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And I think it's a big priority, certainly

for us at Hemophilia Ontario, but I

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think in general around that awareness

raising and again, going back to that,

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it's not a comparison of severity.

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It's a different form of severity

really in how it plays out.

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So with that in mind in terms of even.

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sort of role in the organization

or the board of directors.

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What would you say?

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How, can women or menstruators

play a role in the organization

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or the board of directors to

help advocate for their needs?

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Show up.

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I'm serious.

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There's lots of opportunities within the

organization, whether that's volunteering

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particularly, of course, With the work

that you're doing, Natalie, but up to

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and including our board level, we are

looking for everyone with all kinds of

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different experience, including women

and people who menstruate to come and

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be part of the team that helps support

the community, including the board.

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And we have all kinds of opportunities

for people to come and learn as well.

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You don't have to come to us and

I'll speak to the board side of it.

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You don't have to come with.

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You know, wealth of board experience

or particular professional skills.

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Those are all great things, but we're

creating spaces to have board interns

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come and serve with us for a year just

to come and to listen and to learn

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about how we function and how boards

function, how the organization functions.

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So we're creating opportunities for

people to come in to learn to hopefully

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become the leaders of tomorrow.

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That's an important prerogative for us.

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In our programming as well, for

example, I mentioned our youth

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adventure and mentorship program.

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We are creating leadership opportunities

within that program for kids who are

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getting into the early 20s to become

part of the running of that programming

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and we will be happy to support.

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Women in those roles as well to get

leadership and mentorship training

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and opportunities at a smaller

scale within a comfortable confines,

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which is our community to help build

up their own skill sets as well.

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So, and we need those voices.

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They're just crucial.

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I've got a pretty decent understanding of

where the needs of the bleeding disorders

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community sit with women, but I don't

pretend that I have the lived experience.

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And I know.

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Everything there is to know about that

I value the people on our board who

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are women who have bleeding disorders

and what they can help add to our work.

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We've got some awesome people that we

work with over the years, and they're

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more than capable to speak for themselves

and driving this agenda themselves.

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So, I wasn't kidding when I said show up.

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We Mm-Hmm . We are looking

for people to come.

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We are help happy to help create

situations where women with

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bleeding disorders can learn.

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And we'll be happy to support them in

helping run the organization, supporting

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the community now and going in the future.

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I really appreciate that you

highlighted that they don't need board

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experience or a special skill set.

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Skills are great, but people

have lots of transferable skills.

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And there's no set requirements

automatically out of the gate that

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they require to come and join and be

part of creating directions around

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where the organization goes and I know

what I've often seen as all too often.

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Caregivers of Children with

bleeding disorders will come out

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and want to be that voice, which is

fantastic, and we need that for sure.

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But I think we also, I love that

we're encouraging that women and

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those with the potential to menstruate

really come and have that place,

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not just for maybe your child.

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But for you and your needs and where

you want to see the organization go

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and focus on and be that voice at

the table that helps advocate for,

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as you said, that lived experience

and those needs that are unmet.

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Because to your point exactly, you can

have a pretty good Idea of the landscape

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and what's happening, but nothing

takes replaces that voice at the table

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saying this is what this group needs.

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This is what we need to be focusing

on or where we need to be taking it.

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And those opportunities are plentiful,

especially within our organization,

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because we're so welcoming to

having those Seats at the table.

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So I really like that.

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You pointed out.

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There's there's no special requirement

Necessarily that that is needed and and

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we do need those voices to help further

it along Yeah, and you mentioned the

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concept of advocacy which is just crucial

especially as people take on leadership

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roles with our organization within the

community And if I could put the call out

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for for women or people in menstruate who

want to join us I just want to emphasize

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the importance of advocacy and coming

with the mindset of bringing ideas and

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energy and action to the table that really

drives on the ground results in this area.

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As I mentioned before, it's been

an area that's been recognized in

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the community and healthcare for

several years, but what we're really

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interested in is actually making.

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Positive changes on the ground, actually

impacting people's lives with our

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programming or advocacy and our services.

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So we want people to come.

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We want to hear the stories.

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We want to make these people

part of our leadership team, but.

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From my perspective, most importantly,

we need people who can come with

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the energy and the ideas and the

mindset to drive that change.

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Right?

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Right.

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Absolutely.

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And I would, I would also do an

additional call out and just say that

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even if maybe a board of directors seat

is not quite what you're ready for one

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of the things that I've just started

doing in my department is having a

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monthly peer support group meeting.

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And we come together and we just

talk and we talk about experiences.

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We talk about things that maybe

some of the members need from the

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organization or want to see different

or want to see happening for them.

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So, even if you're not quite ready

for that level of involvement.

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You know, feel free, please to reach

out to me and join our monthly group

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meeting because it's it's a really rich

place for dialoguing and brainstorming

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and creative thinking or just being

a part of something where other

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people understand your experiences.

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So, you highlighted for that for

me cam to just really bring that

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up and mention it out there in

case anyone is looking to join in.

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So I guess my last question for

today is, do you have any final words

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for people in the community to help

raise awareness of women and those

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who menstruate bleeding disorders?

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First, I would say support

the work that we're doing.

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Support HeroX.

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Use that as a resource.

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Be active there.

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Participate in the programming

that flows through that mechanism

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and the work that you're doing.

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Of course, we created that

specifically to help women's bleeding

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women with bleeding disorders.

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So it is a really unique mechanism

that you were instrumental in

336

creating, of course, Natalie,

and the way that people can help.

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With awareness is just simply

by participating and taking that

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opportunity to jump on what is an

awesome set of educational tools

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and a communications platform.

340

You can also support hemophilia Ontario.

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I hope it's evident to everyone by

now how important this issue is.

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For the organization for myself

and our leadership team, our

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executive director, Byron James.

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This is an issue that has been

central to his work with us

345

for the last 6 years as well.

346

Absolutely.

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We've made great strides so

far and continuing to support

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those strides would be.

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Would be crucial to making things better

for women with bleeding disorders.

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And as I said before, I would just

encourage people to show up and to

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participate the best way to make the

change that you want to see is to step

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forward and and make that change happen.

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And we've got through your work through

our board through our entire organization.

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We've got the ability to help people

and support them to make that change.

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We just need the people to come and to

help and participate and be part of it.

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Absolutely.

357

Well, I want to thank you, Kim, for

being a guest on our podcast, The Flow.

358

This was wonderful to have you and another

voice that really sort of adds to the many

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voices that we're collecting on The Flow.

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And also to just really provide

some information to those out

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there that really might be

wondering, how do we get involved?

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What does on Haemophilia Ontario's

Board of Directors think about all this?

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And I just really

appreciate your time today.

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So thanks for joining me.

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Oh, you're welcome, Natalie.

366

It's my pleasure.

367

Thank you for all the work

you're doing in this area.

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You've been a trailblazer on women's

bleeding disorders, and it's been

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a pleasure the last several years.

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I'm really happy to keep

working with you going forward.

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I think there's a lot more

we can achieve together.

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So thank you.