Episode 4 – A Conversation with Maia Meier – Women with Bleeding Disorders

Okay, so welcome Maya.

I'd like to welcome Maya Myers to the show.

Maya is the creator of the podcast sister.

You're Not Alone.

She is a mom of two amazing teens and she has VW D Type two A.

She's been involved with the Canadian Hemophilia Society for many years and

is passionate about raising awareness for women in bleeding disorders.

Maya lives in Toronto and works as an online behavior change coach with a focus

on women in Perry and post-menopause.

So glad to have you here, Maya.

How are you today?

I'm great, thanks.

Thanks so much for having me.

Maya, I thought we would start today with just telling us a little bit about your.

For sure.

So like you said, I live in Toronto.

I'm a mom of two kids, I'm 42.

And yeah, I have, I have Abras Disease type two A, I've known

about it pretty much my whole life.

So my family has a pretty strong bleeding history and so, I don't remember when

exactly I got diagnosed, but I know it was a, I was a young child and

so I really remember just growing up, going to clinic all the time.

It was just part of what we did.

It was our, our yearly checkup there and it was just really part of growing up.

So, you know, I went through pediatric clinic and then

transferred into adult clinic from.

And then 10 years ago I actually moved provinces, so I used to live in

Saskatchewan, so now I, I'm in Ontario, so I switched clinics and, you know, just

been continuing with my care and, and that whole journey once I moved here.

Okay.

Okay.

So this was a really normal part of your life.

So often we hear about people who receive a diagnosis later on, maybe due

to an injury or maybe due to a surgery, whereas this was really something

that you, that was just quite part of your life, that was normal for you.

Yeah.

Yeah, actually it was, and I, I guess I, I feel fortunate in that way, in that,

I mean, I've had a lot of troubles and struggles over the years with various

things due to my bleeding disorder.

But at the same time, because I knew I had it, you know, I always had a, a, you

know, a clinic team I could reach out to.

I always had, you know, product that I knew I needed

to get or that kind of thing.

So it felt like it was a little bit easier to manage in certain.

Okay.

And that would be a lot more helpful knowing that there

were people to reach out to.

But when you went into different sort of, maybe it wasn't the clinic, maybe

you went somewhere else, did you also find you had to kind of educate and

advocate for yourself in those settings?

Yes, completely for sure.

Yeah.

And, and we hear about those stories all the time of like crazy emergency room

visits and struggling to, you know, get your information across and what you need.

And yeah, I've definitely had those, those times happen before as well.

And it is difficult and, you know, I guess, Part of my journey too is just,

is I've learned to advocate for myself during those different difficult times.

Which is helpful because you do learn to, you know, speak up for yourself

and that you have to, and it's important because you know you need,

you know, the certain treatment to help resolve whatever the issue is.

I actually have a story a good advocacy story from my own personal experience.

So basically this last year, I ended up having a hysterectomy myself.

So as I mentioned in the beginning, I'm 42.

You know, I, I have two wonderful children already, so that

part of my life is, is done.

And I, over the last few years, I've actually really struggled a lot more

with my periods and they've just gotten.

Like not great at all and really hard to manage every month.

So I was, I've been infusing myself at home every month due to the periods.

I, fortunately, I work at home, so that worked out okay because I really

wouldn't have been able to go into work.

It's just, it's been, it's been really rough the last couple years.

So, in conjunction with my clinic and my gynecologist, we made the

decision that I was gonna get a hyster.

Which I was totally on board with.

And it was, it was the best decision for myself.

So we had this all planned.

Everything was lined up in terms of, you know, my infusions that

I needed and all of the factor placement and management that way.

Had the procedure.

Everything went really well.

Everything had been lined up in my chart of what I needed in terms of

medical treatment post hysterectomy.

And then that's where everything kind of.

Was a bit of a disaster zone.

So number one I had had this hysterectomy procedure and then was

put in like on the oskin floor, so like on the maternity ward rather.

So it was placed there with the.

You know, everyone had just had babies.

It's not really the, necessarily the best spot, I think, for that

type of recovery necessarily.

And they weren't familiar.

No one there was familiar with my bleeding disorder.

No one was familiar with ordering factor.

With how to give factor, all of those types of things.

And so despite the fact that there was this very clear outline in my chart

from my hematology team there was still a lot of question, a lot of confusion.

My factor was really given late.

It wasn't ordered on time.

And like I'd had a major surgery, it was very stressful situation.

Oh.

Yeah, cause you're just, you know, you're trying, you're trying to recover, you're

like just outta surgery and then you're trying to also manage, making sure you

get your own treatment on time and having it be given properly at the right dosage.

And so there was a lot of confusion, a lot of problems.

I was really strong in speaking up and saying, I need.

You know, this is what I need.

It's written in my chart.

I ended up having to call my clinic.

They called back and would speak with the team.

I asked to speak with the lead on the floor.

So it was a lot of kind of back and forth and it was a real struggle.

So in the end, I was, it, it worked out okay, but not ideal into what had been

kind of laid out of how it was gonna go.

And so, Just, you know, I guess the point of bringing that stuff up, don't

be afraid to speak up for yourself.

Don't be afraid to say this is what was supposed to be happening.

Yeah.

And after that, I did reach out to my hematologist, actually, and,

you know, voiced my concerns and my complaints about what had happened.

And she actually, they really took it to heart and they

ended up having a team meeting.

I was got a call a few weeks later saying that they had done

that, they'd had a team meeting.

They briefed everybody, they set up a different communication plan and

we're actually implementing some changes, which I thought was amazing.

Oh, that's so good.

Yeah.

So in the end, I was able to like, okay.

You know, it didn't go perfectly for myself, but hopefully for someone else

maybe going through at that hospital you know, it can be better managed.

Yeah.

There definitely seems to be a need for better communication around,

you know, that pre that post.

Yeah.

Treatment plan.

I've had similar experiences with much, much less major surgeries.

Mm-hmm.

, you know, where.

Pre-plan.

My experience was it gets to go back and forth.

It's not understood.

It's confused, it's arguing.

Yeah.

And then that alone is very stressful to a patient because you're aware

that there's tension and you're aware that there's confusion and.

I'm really glad to hear that there's going to be, that that team meeting resolved

resulted in some changes being proposed, because that's what I was going to say.

This is not the first time that I have heard that kind of confusion.

Right.

And you know, what is the, what, what do you do when you're following that?

Cause to your point, when you are in recovery, you are not.

Fairly in the right space.

Not enough advocate.

No.

And to be trying to figure out treatment, and to be trying to

figure out all of those things.

So I can imagine that must have been very stressful.

Yeah, it was a very stressful ordeal.

And you know, it could have, like I said, it shouldn't have been really,

because things were quite laid out.

It was a plan.

There was a plan.

Yeah, exactly.

So, you know, most of, most of the time you would say, make sure you have a plan.

Yeah.

But then this is a great example of you had a plan and it wasn't

followed, so then what to do.

And I liked how you brought up, because I myself wouldn't have

necessarily thought to ask for the.

on the floor.

Mm-hmm.

, right?

Mm-hmm.

. I like how you brought up, you called the clinic directly and said

like, this is what's happening.

You need to speak to this particular team.

So, yeah, and I think that your sort of solutions come from.

Having all that experience, I wasn't diagnosed until much, much later.

So my experience wasn't growing up having this part of my life.

So I don't know that I would've thought to make that call ask for that person.

So I think this was, this example was so helpful because it gives a good

reminder of these are things you can do because we do get a little bit

paralyzed, especially when it's our, he.

Yeah, it's, we're dealing with people who know more than we do or supposed

to, but as many of us have experienced as in a bleeding disorder, do not know

more than we do, which is sometimes even scarier because we're in that situation.

So, yeah, that's a great example.

That's a great example.

So thanks for that.

Yeah, of course.

But it can definitely be a struggle still for.

Yeah.

Yeah, we hear that a lot and I'm sure you hear that as well.

Yeah.

Now, I know that you have, as I mentioned you've done some work

with the Canadian Hemophilia Society but have you always been involved

in the bleeding disorder community?

Like what kinds of things have you done because you've been active?

That I'm aware of, but maybe you can talk a little bit about.

Yeah, for sure.

So I like, my first kind of remembrance of getting involved was I went to a

Women in Bleed disorders conference.

Actually it was here I think in Toronto, or I wanna say Toronto

or Montreal, I can't remember.

But I went with my aunt.

I was 17 years old and my aunt and I flew out here and we

went to a conference and it.

Amazing.

Like I just had such a great experience and that was kind

of like my first dive into it.

And then kind of ever since then I just, I really, I say I got hooked cause I . I

was like, okay, now I wanna be involved.

I want to be helping others and just learning more.

And so yeah, I got involved in Saskatchewan with our chapter there and I

was president in Saskatchewan for a while there and then moved out here and got

involved with the Ontario Board as well.

And then I've sat on the national board for many years also.

So it's been a really great experience.

I've had the opportunity to go to a few world congresses

also, which I have to see has.

Like amazing.

They were really amazing experiences and just to meet so

many people from around the world.

And that kind of really led my, I guess, sparked my interest even more

in really trying to raise awareness and get the word out about women in bleeding

disorders because I saw so much of the disparity across the globe going to those

conferences, but, , you know, and then that led to looking just even deeper

within even our own, our own country.

And there's disparity across the, the country too.

So it's it really just kind of sparked my interest even further.

Oh, that's great.

That's great because it's, it's always so inspiring when we have

that passion because we're affected personally and that passion that

really kind of motivates us to be part of that community, be part of the.

Now, if you, as you said, there is a lot of disparity and a lot of

people just trying to advocate for themselves or get that education.

If you were someone in the community who wanted to get involved but

maybe didn't know how mm-hmm.

, what would you suggest?

Cause you have a really great history of really jumping in and mm-hmm.

saying, okay, I wanna be part of this.

And it started with a conference, right?

You know, what comes to my mind is almost, you know, for anybody listening,

get to a conference if you can.

Right?

Yeah.

Get to a conference.

I know we have one of the next conferences coming up for

Hemophilia Ontario is Rondevu.

So when I hear you talk, I'm thinking, oh my gosh.

Like I wanna say to everybody who'd be listening, let's try to get to Renez vu.

It's in Niagara Falls, right?

Yeah.

It's going to be a great opportunity and Hemophilia Ontario is actually gonna be

involved in the programming this year.

Amazing.

Well not this year, but for this renez view of 23.

So when you said that, I thought, oh my gosh, that would be a great place

to start because as you said, it kind of can be part of that catalyst of

hooking you in and giving more ideas.

About how to get involved, but other, like, so I jumped on your conference idea,

but other than that, would there be any other things that if you, if a member in

the community was like, you know what?

I wanna be a part of this movement.

Mm-hmm.

, I wanna be a part of doing this, what would you, what would be your advice?

What would you say would be a good way to do that?

That is a good question.

I think, I guess if you're aware already of our, you know, of some of

these organizations, you know, a great way is just to reach out to them and

just say, you know, I wanna, I wanna do something, I wanna be involved.

You know, is there something I can help with?

Is there something I can participate in?

And it could be something small, right?

But it's just starting to dabble your feet in, I guess, and get your

feet or dabble and get your feet wet.

Yeah.

And kinda get started.

I.

I feel like the almost a bigger challenge is for people who maybe

don't know about these organizations or they're just discovering the bleeding

disorders kind of world and community.

Maybe they've just been diagnosed or something like that.

And I think a great resource is actually social media and I, a lot of women that

I've talked to, that's where they tend to get their initial anyways information.

Is they go on and they search and they go in and they're not Google searching,

but they're going into Facebook, they're going onto Instagram, and they're

seeking out other people who are dealing with, you know, a bleeding disorder.

And then that's how they're making connections.

And I think, so I think that can be a really great way too to get yourself

kind of information and then learn about these organizations and then tap into.

Right.

Okay.

That's excellent.

That's really good thinking.

Thank you for that.

And I also was thinking as you were talking that the other important

thing I think to maybe put out there is when we think of volunteering

or getting involved mm-hmm.

lots of times we think of that like, oh my gosh, where do I even start?

I don't have time.

There's, I would have to give a big commit.

But in many cases you can even volunteer to be on a project.

You don't even have to be like an ongoing volunteer or something.

Somebody doing something.

Yeah.

It can be something small that sparks you, or you could introduce a project, like

say there was something you wanted to do, you could come and bring it to us or bring

it to somebody, one of the organizations and say, Hey, I thought of this.

Yeah.

That's given me a lot to think about because we're always

trying to find opportunities.

Yeah.

For people to get involved at whatever place they want to be, right?

Yeah.

Whether it's a project, whether it's ongoing, maybe part of a committee,

whatever it is, but being, if you want to get involved, kind of being

able to throw yourself out there.

Pick and choose where you fit or where you desire to be there.

So thanks for that.

Yeah.

Cause I think, I think a lot of people would have that question, but

wouldn't really know where to start or how to even begin to broach it.

And being somebody who has so much of that experience, especially, you know, not just

this province, but in another province.

Mm-hmm.

and kind of working your way through that.

I think that's, those are really good ideas, so thank you for that.

Yeah.

So I want to maybe switch gears and start to move towards talking a

little bit about your podcast sister.

You're Not Alone.

Maybe you could give us a little bit of an idea of how you came to decide to do that.

Cause that's a commitment, that's, that's also a commitment to do . So talk a

little bit about how did that come up?

How, how did you come.

For sure.

So actually it kind of just started a couple, like a year and a half ago,

and I was really starting to kind of, I, I'm not on any boards anymore

at the moment, and, and that's okay.

But I've I was like still wanting to do something else to be, you know, involved

in, I guess still raising awareness.

And so a friend of mine actually had started a, a health

podcast about ostomies and.

That got me thinking.

I was like, oh, you know, I could use that as a, as an avenue to really start

reaching out to people and create kind of a community and raise awareness that way.

And so that's kind of what initially kind of got me started.

So I, thanks, I give thanks to her for the idea.

. Nice.

And yeah, I just, that's, I said, okay, I'm gonna do it.

And so I just started it.

I began it in it was in February, it launched this.

And so it's been going very well so far.

We have 17 episodes that are up so far and we've got over a thousand downloads

now, so I'm super excited about that.

So a lot of people are, are listening, which is, is great.

And yeah, like I really started it with the goal of kind of having us

place to have safe conversations.

Being just candid conversations as well about any woman who's

living with a bleeding disorder.

So that was kind of the focus and we really talk about everything.

So anything that's like.

From diagnosis to struggles with periods, surgeries, managing your care, life after

periods cuz we end those at one point.

You know, advocating for yourself, that's a huge piece and really also the impact

that everything has on our mental health.

So we try and touch on a lot of different subjects and my hope is

just that we can normalize these discussions and conversations and raise

awareness and encourage and empower.

Okay.

Okay, nice.

And how, like, how did you decide, because, so these are

set up like stories, right?

Kind of.

Yeah, we, so maybe talk a little bit about like how it's, how it's set up,

how does it, how does that come, first of all, how is it set up and what made

you decide to do it in this format?

Well, so the podcast episodes are just, they're specific and

focused on a single person, so it's a one woman's story, basically.

And so we detail like her as, like I said, her diagnosis, story you

know, struggles that she's had, obstacles she's had to overcome.

We touch on all those like kind of different topics like I was mentioning.

They're really, you know, I've got women from all ages, so women in their

twenties all the way up into their sixties and from all varying backgrounds.

So I have women from different countries as well, so it's not

just specifically to Canada.

I have women from the us from Europe, the uk, Puerto Rico, so a real diverse

group of women, which is amazing.

Mm-hmm.

, because everybody's story is so unique and it really depends on, you

know, also where you live, you know?

Our bleed disorders managed in those different countries, and it

does definitely vary as well as our healthcare systems vary, insurance

varies, all of these different things.

So we really just kind of touch on all of those different topics that

are related to that woman's story.

Okay.

Okay.

Thanks for that.

And when you were thinking of doing this podcast and you were thinking,

okay, this is, this is something maybe I could get into, you know,

you said I'm not on boards anymore.

I could this, and I also liked the connection when you said that your

experience is that a lot of the searching happens through social media

and through different things like that.

Mm-hmm.

so.

How, how did you decide on, you know what?

I think I'm gonna focus on a single story for each episode.

How like rather than, you know, it could, you could have gone any direction, right?

With a podcast episode.

It could have been just you kind of talking each time, who knows?

But how did you decide that, you know what, I'm gonna try to find

women that would like to share their single story and their journey.

What made you decide to do this sort of single story?

I think it was just the part of that ability to share our story and

women as women, I feel like, well, a lot of times we like to talk a

lot and we like to share, right?

We like to share our experience and we like to hear others'

experiences, and it gives us that sense of, I'm not alone, you know?

Hence why the name sister, you're not alone.

Because oftentimes with a chronic.

We have a lot of times where we can feel really alone and we can feel like

we're the only one struggling with this.

And especially if you maybe haven't found a community of as well you know,

you don't ha you maybe haven't heard other stories yet and you haven't

heard other women's struggles and said, oh my gosh, I didn't realize, like,

yeah, I feel this exact way I've had to deal with this exact situation.

And so I think that was kind of my underly.

Goal with it or reason for kind of going that approach.

It's it's helpful I think to, like I said, share that story and being able to give

those examples and hear those ways of people overcoming those struggles as well.

And you know, resources of, of reaching out and saying, Hey, you know, I

heard your episode of this podcast.

Like, I'd love to talk to you more about X, Y, Z.

Right.

Right, right.

And share their story.

Yeah.

If they, so, if they so chose to.

Yeah.

And do you think now part of like our goals at Hemophilia Ontario are to also

be really making an open space and a welcoming space for anyone who traits.

Because if you have you know, a menstrual period or you menstruate or you have

any, but you don't identify as a.

These, these things are still applicable to you.

So do you think that that would be a useful resource for others

who maybe don't identify as women, but have these similar, relatable.

Bleeding challenges.

Mm-hmm.

. Yeah, definitely.

Definitely.

Because I mean, if you're having those same sorts of bleeding issues, much of the

discussion is still going to probably feel like you, you would relate to it, right?

So I definitely think that's yeah, a applicable to anyone.

Any, anyone who is menstruating or having those types of bleeding issues.

We do talk about it quite a lot in the podcast because it's a common one.

That tends to be people's biggest issue because it happens

every month or more so often.

Right.

So yeah, definitely.

Definitely.

Right, because with heavy menstrual bleeding, it would be applicable

because it often does come up in, in, in everyone's kind of journey

along the way at some point.

Yeah.

If there is exactly vaginal bleeding, it's bound to come up in the conversation.

That's right.

Yeah.

Okay.

Yeah, that's helpful to know.

Especially as.

Sort of expand and try to make these spaces welcoming to anybody

who menstruates and is dealing with a, a bleeding disorder.

So if somebody wanted to kind of come on your podcast mm-hmm.

or reach out to you or maybe share their story how, how, how would they find.

Yeah, so I'm, I, they can find me on any social media, so I'm on Instagram and

Facebook at Mya Latisha is my handle, so they can reach out through there.

I do share those podcast episodes on those platforms as well, so you can

always find them and then, and, and then comment there or send me a message.

For sure.

The podcast is also on.

Spotify and Apple as well.

So you can find those there too.

But anyone could also just reach out to me through email as well.

I'd be happy to speak with them and I'd love to hear their story and

be able to share it with others.

So if anyone is interested at all, I am more than open to, to

having that discussion with them.

Oh, that's excellent.

That's excellent.

Yes, because our experience also has been that.

People like to hear relatable stories.

One of, one of the sort of key things that we hear, or that I hear all the time is

because it is considered a rare disease.

Mm-hmm.

, you, you, you're not talking about it with everybody.

When you go into a setting or you go into, you know, anywhere and

you say I have a bleeding disorder.

There's not a lot.

Conversation that follows that , people don't really know how to respond to that.

And pri probably because it is rare typically, and it's not well known.

So there's not a lot of spaces that you can go and comfortably kind of talk

about, oh yeah, I have this experience.

And the other person would say, me too.

Oh my gosh, what do you do when that happens?

And yeah, I think what stories provide.

Is this opportunity to absorb that and go, oh my gosh, okay.

Yes, I feel that too.

Or I go through that too.

Yeah.

I know what that feels like.

And that's why I think stories and opportunities to even come together

when like, so for us, we try to do programming that brings people

together to be able to do exactly that.

And, and again, my experience always is when we come together as in person,

. People are so excited to, like everybody jumps off of everybody's conversations

because it's so nice to be in a room.

Yeah.

Where there are other people who have similar experiences and I

think that's a real benefit to having someplace you can go.

And read about other people's stories.

Yeah.

And hear about those things that, where that resonate with

you and you go, oh my gosh.

Or you learn something.

Yeah.

Even that you didn't know before or cuz I know there's some episodes of your

podcast that talk about even parenting.

Yeah.

So when you're parenting and you have a bleeding disorder and,

and I think those are great.

If you're not a parent, maybe you find that interesting and you want to go and

hear more about that, read more about that, or find out more about that.

So I think, I think that stories is such a great resource in so

many ways for people to be able to.

Just really sit and listen and, and kind of absorb that information.

So I, I thank you so much for coming today.

Is there anything else that you wanna share or, I just don't wanna make sure

that if there's anything else you wanted to expand on that you have an opportunity.

I, I don't think so.

I think that was great.

Thank you so much for having me.

I guess just the last piece of it.

Yeah, like, I think just if women, if you know, if you, if you're out there,

you're, you know, you're struggling with a bleeding disorder, you are working through

that and, and you wanna share your story.

You know, if, do so do so because you're right, it's like it can benefit

someone else so much as well as ourselves just to express that and be

feel we're listened to and we're heard.

That's such a huge part of it.

And it just encourages others, like you say, to to have that connection

and realize that they're not by themselves going through this.

And you can work through struggles that you're having there.

Options out there.

There's ways to get the answers you need and all of that kind of stuff.

And it's just helpful to, to be able to hear that from somebody else.

So if you're, if you're open to sharing, share, share, share . And

I would add to that, actually, you just made me think of something.

I would add to that too.

It, it doesn't have to be a grand story.

Like, I think a common thing that I often hear and feel myself is.

I have a mild diagnosis.

Yeah.

Who's gonna wanna hear my story?

Uhhuh.

And I think that that is something that we often hear in the community.

So to what you just said, I would add to the fact that all

stories, anybody, somebody's going to be able to relate to that.

It's a, it's, it's worth hearing.

If you wanna tell it.

So there shouldn't be any question about, I don't know,

would my story be worth sharing?

It's always worth sharing because there will always be someone.

Exactly.

Someone else will resonate with that and will appreciate hearing the story.

So you actually made me think of that when you were talking, so thanks for that.

Yeah, no, that's great.

Well, thanks again.

It's been wonderful to have you on and I'm glad you were here.

So thank you.