Join us as we chat with Maia Meier, a woman living with a bleeding disorder. Maia shares some personal stories and insights and walks us through her own podcast "Sister, You're Not Alone", where other women share their stores about living with a bleeding disorder. This episode is in English only.
Please note - Nothing that is shared in this episode should be interpreted as medical advice.
Okay, so welcome Maya.
Speaker:I'd like to welcome Maya Myers to the show.
Speaker:Maya is the creator of the podcast sister.
Speaker:You're Not Alone.
Speaker:She is a mom of two amazing teens and she has VW D Type two A.
Speaker:She's been involved with the Canadian Hemophilia Society for many years and
Speaker:is passionate about raising awareness for women in bleeding disorders.
Speaker:Maya lives in Toronto and works as an online behavior change coach with a focus
Speaker:on women in Perry and post-menopause.
Speaker:So glad to have you here, Maya.
Speaker:How are you today?
Speaker:I'm great, thanks.
Speaker:Thanks so much for having me.
Speaker:Maya, I thought we would start today with just telling us a little bit about your.
Speaker:For sure.
Speaker:So like you said, I live in Toronto.
Speaker:I'm a mom of two kids, I'm 42.
Speaker:And yeah, I have, I have Abras Disease type two A, I've known
Speaker:about it pretty much my whole life.
Speaker:So my family has a pretty strong bleeding history and so, I don't remember when
Speaker:exactly I got diagnosed, but I know it was a, I was a young child and
Speaker:so I really remember just growing up, going to clinic all the time.
Speaker:It was just part of what we did.
Speaker:It was our, our yearly checkup there and it was just really part of growing up.
Speaker:So, you know, I went through pediatric clinic and then
Speaker:transferred into adult clinic from.
Speaker:And then 10 years ago I actually moved provinces, so I used to live in
Speaker:Saskatchewan, so now I, I'm in Ontario, so I switched clinics and, you know, just
Speaker:been continuing with my care and, and that whole journey once I moved here.
Speaker:Okay.
Speaker:Okay.
Speaker:So this was a really normal part of your life.
Speaker:So often we hear about people who receive a diagnosis later on, maybe due
Speaker:to an injury or maybe due to a surgery, whereas this was really something
Speaker:that you, that was just quite part of your life, that was normal for you.
Speaker:Yeah.
Speaker:Yeah, actually it was, and I, I guess I, I feel fortunate in that way, in that,
Speaker:I mean, I've had a lot of troubles and struggles over the years with various
Speaker:things due to my bleeding disorder.
Speaker:But at the same time, because I knew I had it, you know, I always had a, a, you
Speaker:know, a clinic team I could reach out to.
Speaker:I always had, you know, product that I knew I needed
Speaker:to get or that kind of thing.
Speaker:So it felt like it was a little bit easier to manage in certain.
Speaker:Okay.
Speaker:And that would be a lot more helpful knowing that there
Speaker:were people to reach out to.
Speaker:But when you went into different sort of, maybe it wasn't the clinic, maybe
Speaker:you went somewhere else, did you also find you had to kind of educate and
Speaker:advocate for yourself in those settings?
Speaker:Yes, completely for sure.
Speaker:Yeah.
Speaker:And, and we hear about those stories all the time of like crazy emergency room
Speaker:visits and struggling to, you know, get your information across and what you need.
Speaker:And yeah, I've definitely had those, those times happen before as well.
Speaker:And it is difficult and, you know, I guess, Part of my journey too is just,
Speaker:is I've learned to advocate for myself during those different difficult times.
Speaker:Which is helpful because you do learn to, you know, speak up for yourself
Speaker:and that you have to, and it's important because you know you need,
Speaker:you know, the certain treatment to help resolve whatever the issue is.
Speaker:I actually have a story a good advocacy story from my own personal experience.
Speaker:So basically this last year, I ended up having a hysterectomy myself.
Speaker:So as I mentioned in the beginning, I'm 42.
Speaker:You know, I, I have two wonderful children already, so that
Speaker:part of my life is, is done.
Speaker:And I, over the last few years, I've actually really struggled a lot more
Speaker:with my periods and they've just gotten.
Speaker:Like not great at all and really hard to manage every month.
Speaker:So I was, I've been infusing myself at home every month due to the periods.
Speaker:I, fortunately, I work at home, so that worked out okay because I really
Speaker:wouldn't have been able to go into work.
Speaker:It's just, it's been, it's been really rough the last couple years.
Speaker:So, in conjunction with my clinic and my gynecologist, we made the
Speaker:decision that I was gonna get a hyster.
Speaker:Which I was totally on board with.
Speaker:And it was, it was the best decision for myself.
Speaker:So we had this all planned.
Speaker:Everything was lined up in terms of, you know, my infusions that
Speaker:I needed and all of the factor placement and management that way.
Speaker:Had the procedure.
Speaker:Everything went really well.
Speaker:Everything had been lined up in my chart of what I needed in terms of
Speaker:medical treatment post hysterectomy.
Speaker:And then that's where everything kind of.
Speaker:Was a bit of a disaster zone.
Speaker:So number one I had had this hysterectomy procedure and then was
Speaker:put in like on the oskin floor, so like on the maternity ward rather.
Speaker:So it was placed there with the.
Speaker:You know, everyone had just had babies.
Speaker:It's not really the, necessarily the best spot, I think, for that
Speaker:type of recovery necessarily.
Speaker:And they weren't familiar.
Speaker:No one there was familiar with my bleeding disorder.
Speaker:No one was familiar with ordering factor.
Speaker:With how to give factor, all of those types of things.
Speaker:And so despite the fact that there was this very clear outline in my chart
Speaker:from my hematology team there was still a lot of question, a lot of confusion.
Speaker:My factor was really given late.
Speaker:It wasn't ordered on time.
Speaker:And like I'd had a major surgery, it was very stressful situation.
Speaker:Oh.
Speaker:Yeah, cause you're just, you know, you're trying, you're trying to recover, you're
Speaker:like just outta surgery and then you're trying to also manage, making sure you
Speaker:get your own treatment on time and having it be given properly at the right dosage.
Speaker:And so there was a lot of confusion, a lot of problems.
Speaker:I was really strong in speaking up and saying, I need.
Speaker:You know, this is what I need.
Speaker:It's written in my chart.
Speaker:I ended up having to call my clinic.
Speaker:They called back and would speak with the team.
Speaker:I asked to speak with the lead on the floor.
Speaker:So it was a lot of kind of back and forth and it was a real struggle.
Speaker:So in the end, I was, it, it worked out okay, but not ideal into what had been
Speaker:kind of laid out of how it was gonna go.
Speaker:And so, Just, you know, I guess the point of bringing that stuff up, don't
Speaker:be afraid to speak up for yourself.
Speaker:Don't be afraid to say this is what was supposed to be happening.
Speaker:Yeah.
Speaker:And after that, I did reach out to my hematologist, actually, and,
Speaker:you know, voiced my concerns and my complaints about what had happened.
Speaker:And she actually, they really took it to heart and they
Speaker:ended up having a team meeting.
Speaker:I was got a call a few weeks later saying that they had done
Speaker:that, they'd had a team meeting.
Speaker:They briefed everybody, they set up a different communication plan and
Speaker:we're actually implementing some changes, which I thought was amazing.
Speaker:Oh, that's so good.
Speaker:Yeah.
Speaker:So in the end, I was able to like, okay.
Speaker:You know, it didn't go perfectly for myself, but hopefully for someone else
Speaker:maybe going through at that hospital you know, it can be better managed.
Speaker:Yeah.
Speaker:There definitely seems to be a need for better communication around,
Speaker:you know, that pre that post.
Speaker:Yeah.
Speaker:Treatment plan.
Speaker:I've had similar experiences with much, much less major surgeries.
Speaker:Mm-hmm.
Speaker:, you know, where.
Speaker:Pre-plan.
Speaker:My experience was it gets to go back and forth.
Speaker:It's not understood.
Speaker:It's confused, it's arguing.
Speaker:Yeah.
Speaker:And then that alone is very stressful to a patient because you're aware
Speaker:that there's tension and you're aware that there's confusion and.
Speaker:I'm really glad to hear that there's going to be, that that team meeting resolved
Speaker:resulted in some changes being proposed, because that's what I was going to say.
Speaker:This is not the first time that I have heard that kind of confusion.
Speaker:Right.
Speaker:And you know, what is the, what, what do you do when you're following that?
Speaker:Cause to your point, when you are in recovery, you are not.
Speaker:Fairly in the right space.
Speaker:Not enough advocate.
Speaker:No.
Speaker:And to be trying to figure out treatment, and to be trying to
Speaker:figure out all of those things.
Speaker:So I can imagine that must have been very stressful.
Speaker:Yeah, it was a very stressful ordeal.
Speaker:And you know, it could have, like I said, it shouldn't have been really,
Speaker:because things were quite laid out.
Speaker:It was a plan.
Speaker:There was a plan.
Speaker:Yeah, exactly.
Speaker:So, you know, most of, most of the time you would say, make sure you have a plan.
Speaker:Yeah.
Speaker:But then this is a great example of you had a plan and it wasn't
Speaker:followed, so then what to do.
Speaker:And I liked how you brought up, because I myself wouldn't have
Speaker:necessarily thought to ask for the.
Speaker:on the floor.
Speaker:Mm-hmm.
Speaker:, right?
Speaker:Mm-hmm.
Speaker:. I like how you brought up, you called the clinic directly and said
Speaker:like, this is what's happening.
Speaker:You need to speak to this particular team.
Speaker:So, yeah, and I think that your sort of solutions come from.
Speaker:Having all that experience, I wasn't diagnosed until much, much later.
Speaker:So my experience wasn't growing up having this part of my life.
Speaker:So I don't know that I would've thought to make that call ask for that person.
Speaker:So I think this was, this example was so helpful because it gives a good
Speaker:reminder of these are things you can do because we do get a little bit
Speaker:paralyzed, especially when it's our, he.
Speaker:Yeah, it's, we're dealing with people who know more than we do or supposed
Speaker:to, but as many of us have experienced as in a bleeding disorder, do not know
Speaker:more than we do, which is sometimes even scarier because we're in that situation.
Speaker:So, yeah, that's a great example.
Speaker:That's a great example.
Speaker:So thanks for that.
Speaker:Yeah, of course.
Speaker:But it can definitely be a struggle still for.
Speaker:Yeah.
Speaker:Yeah, we hear that a lot and I'm sure you hear that as well.
Speaker:Yeah.
Speaker:Now, I know that you have, as I mentioned you've done some work
Speaker:with the Canadian Hemophilia Society but have you always been involved
Speaker:in the bleeding disorder community?
Speaker:Like what kinds of things have you done because you've been active?
Speaker:That I'm aware of, but maybe you can talk a little bit about.
Speaker:Yeah, for sure.
Speaker:So I like, my first kind of remembrance of getting involved was I went to a
Speaker:Women in Bleed disorders conference.
Speaker:Actually it was here I think in Toronto, or I wanna say Toronto
Speaker:or Montreal, I can't remember.
Speaker:But I went with my aunt.
Speaker:I was 17 years old and my aunt and I flew out here and we
Speaker:went to a conference and it.
Speaker:Amazing.
Speaker:Like I just had such a great experience and that was kind
Speaker:of like my first dive into it.
Speaker:And then kind of ever since then I just, I really, I say I got hooked cause I . I
Speaker:was like, okay, now I wanna be involved.
Speaker:I want to be helping others and just learning more.
Speaker:And so yeah, I got involved in Saskatchewan with our chapter there and I
Speaker:was president in Saskatchewan for a while there and then moved out here and got
Speaker:involved with the Ontario Board as well.
Speaker:And then I've sat on the national board for many years also.
Speaker:So it's been a really great experience.
Speaker:I've had the opportunity to go to a few world congresses
Speaker:also, which I have to see has.
Speaker:Like amazing.
Speaker:They were really amazing experiences and just to meet so
Speaker:many people from around the world.
Speaker:And that kind of really led my, I guess, sparked my interest even more
Speaker:in really trying to raise awareness and get the word out about women in bleeding
Speaker:disorders because I saw so much of the disparity across the globe going to those
Speaker:conferences, but, , you know, and then that led to looking just even deeper
Speaker:within even our own, our own country.
Speaker:And there's disparity across the, the country too.
Speaker:So it's it really just kind of sparked my interest even further.
Speaker:Oh, that's great.
Speaker:That's great because it's, it's always so inspiring when we have
Speaker:that passion because we're affected personally and that passion that
Speaker:really kind of motivates us to be part of that community, be part of the.
Speaker:Now, if you, as you said, there is a lot of disparity and a lot of
Speaker:people just trying to advocate for themselves or get that education.
Speaker:If you were someone in the community who wanted to get involved but
Speaker:maybe didn't know how mm-hmm.
Speaker:, what would you suggest?
Speaker:Cause you have a really great history of really jumping in and mm-hmm.
Speaker:saying, okay, I wanna be part of this.
Speaker:And it started with a conference, right?
Speaker:You know, what comes to my mind is almost, you know, for anybody listening,
Speaker:get to a conference if you can.
Speaker:Right?
Speaker:Yeah.
Speaker:Get to a conference.
Speaker:I know we have one of the next conferences coming up for
Speaker:Hemophilia Ontario is Rondevu.
Speaker:in May, 2023.
Speaker:So when I hear you talk, I'm thinking, oh my gosh.
Speaker:Like I wanna say to everybody who'd be listening, let's try to get to Renez vu.
Speaker:It's in Niagara Falls, right?
Speaker:Yeah.
Speaker:It's going to be a great opportunity and Hemophilia Ontario is actually gonna be
Speaker:involved in the programming this year.
Speaker:Amazing.
Speaker:Well not this year, but for this renez view of 23.
Speaker:So when you said that, I thought, oh my gosh, that would be a great place
Speaker:to start because as you said, it kind of can be part of that catalyst of
Speaker:hooking you in and giving more ideas.
Speaker:About how to get involved, but other, like, so I jumped on your conference idea,
Speaker:but other than that, would there be any other things that if you, if a member in
Speaker:the community was like, you know what?
Speaker:I wanna be a part of this movement.
Speaker:Mm-hmm.
Speaker:, I wanna be a part of doing this, what would you, what would be your advice?
Speaker:What would you say would be a good way to do that?
Speaker:That is a good question.
Speaker:I think, I guess if you're aware already of our, you know, of some of
Speaker:these organizations, you know, a great way is just to reach out to them and
Speaker:just say, you know, I wanna, I wanna do something, I wanna be involved.
Speaker:You know, is there something I can help with?
Speaker:Is there something I can participate in?
Speaker:And it could be something small, right?
Speaker:But it's just starting to dabble your feet in, I guess, and get your
Speaker:feet or dabble and get your feet wet.
Speaker:Yeah.
Speaker:And kinda get started.
Speaker:I.
Speaker:I feel like the almost a bigger challenge is for people who maybe
Speaker:don't know about these organizations or they're just discovering the bleeding
Speaker:disorders kind of world and community.
Speaker:Maybe they've just been diagnosed or something like that.
Speaker:And I think a great resource is actually social media and I, a lot of women that
Speaker:I've talked to, that's where they tend to get their initial anyways information.
Speaker:Is they go on and they search and they go in and they're not Google searching,
Speaker:but they're going into Facebook, they're going onto Instagram, and they're
Speaker:seeking out other people who are dealing with, you know, a bleeding disorder.
Speaker:And then that's how they're making connections.
Speaker:And I think, so I think that can be a really great way too to get yourself
Speaker:kind of information and then learn about these organizations and then tap into.
Speaker:Right.
Speaker:Okay.
Speaker:That's excellent.
Speaker:That's really good thinking.
Speaker:Thank you for that.
Speaker:And I also was thinking as you were talking that the other important
Speaker:thing I think to maybe put out there is when we think of volunteering
Speaker:or getting involved mm-hmm.
Speaker:lots of times we think of that like, oh my gosh, where do I even start?
Speaker:I don't have time.
Speaker:There's, I would have to give a big commit.
Speaker:But in many cases you can even volunteer to be on a project.
Speaker:You don't even have to be like an ongoing volunteer or something.
Speaker:Somebody doing something.
Speaker:Yeah.
Speaker:It can be something small that sparks you, or you could introduce a project, like
Speaker:say there was something you wanted to do, you could come and bring it to us or bring
Speaker:it to somebody, one of the organizations and say, Hey, I thought of this.
Speaker:Yeah.
Speaker:That's given me a lot to think about because we're always
Speaker:trying to find opportunities.
Speaker:Yeah.
Speaker:For people to get involved at whatever place they want to be, right?
Speaker:Yeah.
Speaker:Whether it's a project, whether it's ongoing, maybe part of a committee,
Speaker:whatever it is, but being, if you want to get involved, kind of being
Speaker:able to throw yourself out there.
Speaker:Pick and choose where you fit or where you desire to be there.
Speaker:So thanks for that.
Speaker:Yeah.
Speaker:Cause I think, I think a lot of people would have that question, but
Speaker:wouldn't really know where to start or how to even begin to broach it.
Speaker:And being somebody who has so much of that experience, especially, you know, not just
Speaker:this province, but in another province.
Speaker:Mm-hmm.
Speaker:and kind of working your way through that.
Speaker:I think that's, those are really good ideas, so thank you for that.
Speaker:Yeah.
Speaker:So I want to maybe switch gears and start to move towards talking a
Speaker:little bit about your podcast sister.
Speaker:You're Not Alone.
Speaker:Maybe you could give us a little bit of an idea of how you came to decide to do that.
Speaker:Cause that's a commitment, that's, that's also a commitment to do . So talk a
Speaker:little bit about how did that come up?
Speaker:How, how did you come.
Speaker:For sure.
Speaker:So actually it kind of just started a couple, like a year and a half ago,
Speaker:and I was really starting to kind of, I, I'm not on any boards anymore
Speaker:at the moment, and, and that's okay.
Speaker:But I've I was like still wanting to do something else to be, you know, involved
Speaker:in, I guess still raising awareness.
Speaker:And so a friend of mine actually had started a, a health
Speaker:podcast about ostomies and.
Speaker:That got me thinking.
Speaker:I was like, oh, you know, I could use that as a, as an avenue to really start
Speaker:reaching out to people and create kind of a community and raise awareness that way.
Speaker:And so that's kind of what initially kind of got me started.
Speaker:So I, thanks, I give thanks to her for the idea.
Speaker:. Nice.
Speaker:And yeah, I just, that's, I said, okay, I'm gonna do it.
Speaker:And so I just started it.
Speaker:I began it in it was in February, it launched this.
Speaker:And so it's been going very well so far.
Speaker:We have 17 episodes that are up so far and we've got over a thousand downloads
Speaker:now, so I'm super excited about that.
Speaker:So a lot of people are, are listening, which is, is great.
Speaker:And yeah, like I really started it with the goal of kind of having us
Speaker:place to have safe conversations.
Speaker:Being just candid conversations as well about any woman who's
Speaker:living with a bleeding disorder.
Speaker:So that was kind of the focus and we really talk about everything.
Speaker:So anything that's like.
Speaker:From diagnosis to struggles with periods, surgeries, managing your care, life after
Speaker:periods cuz we end those at one point.
Speaker:You know, advocating for yourself, that's a huge piece and really also the impact
Speaker:that everything has on our mental health.
Speaker:So we try and touch on a lot of different subjects and my hope is
Speaker:just that we can normalize these discussions and conversations and raise
Speaker:awareness and encourage and empower.
Speaker:Okay.
Speaker:Okay, nice.
Speaker:And how, like, how did you decide, because, so these are
Speaker:set up like stories, right?
Speaker:Kind of.
Speaker:Yeah, we, so maybe talk a little bit about like how it's, how it's set up,
Speaker:how does it, how does that come, first of all, how is it set up and what made
Speaker:you decide to do it in this format?
Speaker:Well, so the podcast episodes are just, they're specific and
Speaker:focused on a single person, so it's a one woman's story, basically.
Speaker:And so we detail like her as, like I said, her diagnosis, story you
Speaker:know, struggles that she's had, obstacles she's had to overcome.
Speaker:We touch on all those like kind of different topics like I was mentioning.
Speaker:They're really, you know, I've got women from all ages, so women in their
Speaker:twenties all the way up into their sixties and from all varying backgrounds.
Speaker:So I have women from different countries as well, so it's not
Speaker:just specifically to Canada.
Speaker:I have women from the us from Europe, the uk, Puerto Rico, so a real diverse
Speaker:group of women, which is amazing.
Speaker:Mm-hmm.
Speaker:, because everybody's story is so unique and it really depends on, you
Speaker:know, also where you live, you know?
Speaker:Our bleed disorders managed in those different countries, and it
Speaker:does definitely vary as well as our healthcare systems vary, insurance
Speaker:varies, all of these different things.
Speaker:So we really just kind of touch on all of those different topics that
Speaker:are related to that woman's story.
Speaker:Okay.
Speaker:Okay.
Speaker:Thanks for that.
Speaker:And when you were thinking of doing this podcast and you were thinking,
Speaker:okay, this is, this is something maybe I could get into, you know,
Speaker:you said I'm not on boards anymore.
Speaker:I could this, and I also liked the connection when you said that your
Speaker:experience is that a lot of the searching happens through social media
Speaker:and through different things like that.
Speaker:Mm-hmm.
Speaker:so.
Speaker:How, how did you decide on, you know what?
Speaker:I think I'm gonna focus on a single story for each episode.
Speaker:How like rather than, you know, it could, you could have gone any direction, right?
Speaker:With a podcast episode.
Speaker:It could have been just you kind of talking each time, who knows?
Speaker:But how did you decide that, you know what, I'm gonna try to find
Speaker:women that would like to share their single story and their journey.
Speaker:What made you decide to do this sort of single story?
Speaker:I think it was just the part of that ability to share our story and
Speaker:women as women, I feel like, well, a lot of times we like to talk a
Speaker:lot and we like to share, right?
Speaker:We like to share our experience and we like to hear others'
Speaker:experiences, and it gives us that sense of, I'm not alone, you know?
Speaker:Hence why the name sister, you're not alone.
Speaker:Because oftentimes with a chronic.
Speaker:We have a lot of times where we can feel really alone and we can feel like
Speaker:we're the only one struggling with this.
Speaker:And especially if you maybe haven't found a community of as well you know,
Speaker:you don't ha you maybe haven't heard other stories yet and you haven't
Speaker:heard other women's struggles and said, oh my gosh, I didn't realize, like,
Speaker:yeah, I feel this exact way I've had to deal with this exact situation.
Speaker:And so I think that was kind of my underly.
Speaker:Goal with it or reason for kind of going that approach.
Speaker:It's it's helpful I think to, like I said, share that story and being able to give
Speaker:those examples and hear those ways of people overcoming those struggles as well.
Speaker:And you know, resources of, of reaching out and saying, Hey, you know, I
Speaker:heard your episode of this podcast.
Speaker:Like, I'd love to talk to you more about X, Y, Z.
Speaker:Right.
Speaker:Right, right.
Speaker:And share their story.
Speaker:Yeah.
Speaker:If they, so, if they so chose to.
Speaker:Yeah.
Speaker:And do you think now part of like our goals at Hemophilia Ontario are to also
Speaker:be really making an open space and a welcoming space for anyone who traits.
Speaker:Because if you have you know, a menstrual period or you menstruate or you have
Speaker:any, but you don't identify as a.
Speaker:These, these things are still applicable to you.
Speaker:So do you think that that would be a useful resource for others
Speaker:who maybe don't identify as women, but have these similar, relatable.
Speaker:Bleeding challenges.
Speaker:Mm-hmm.
Speaker:. Yeah, definitely.
Speaker:Definitely.
Speaker:Because I mean, if you're having those same sorts of bleeding issues, much of the
Speaker:discussion is still going to probably feel like you, you would relate to it, right?
Speaker:So I definitely think that's yeah, a applicable to anyone.
Speaker:Any, anyone who is menstruating or having those types of bleeding issues.
Speaker:We do talk about it quite a lot in the podcast because it's a common one.
Speaker:That tends to be people's biggest issue because it happens
Speaker:every month or more so often.
Speaker:Right.
Speaker:So yeah, definitely.
Speaker:Definitely.
Speaker:Right, because with heavy menstrual bleeding, it would be applicable
Speaker:because it often does come up in, in, in everyone's kind of journey
Speaker:along the way at some point.
Speaker:Yeah.
Speaker:If there is exactly vaginal bleeding, it's bound to come up in the conversation.
Speaker:That's right.
Speaker:Yeah.
Speaker:Okay.
Speaker:Yeah, that's helpful to know.
Speaker:Especially as.
Speaker:Sort of expand and try to make these spaces welcoming to anybody
Speaker:who menstruates and is dealing with a, a bleeding disorder.
Speaker:So if somebody wanted to kind of come on your podcast mm-hmm.
Speaker:or reach out to you or maybe share their story how, how, how would they find.
Speaker:Yeah, so I'm, I, they can find me on any social media, so I'm on Instagram and
Speaker:Facebook at Mya Latisha is my handle, so they can reach out through there.
Speaker:I do share those podcast episodes on those platforms as well, so you can
Speaker:always find them and then, and, and then comment there or send me a message.
Speaker:For sure.
Speaker:The podcast is also on.
Speaker:Spotify and Apple as well.
Speaker:So you can find those there too.
Speaker:But anyone could also just reach out to me through email as well.
Speaker:I'd be happy to speak with them and I'd love to hear their story and
Speaker:be able to share it with others.
Speaker:So if anyone is interested at all, I am more than open to, to
Speaker:having that discussion with them.
Speaker:Oh, that's excellent.
Speaker:That's excellent.
Speaker:Yes, because our experience also has been that.
Speaker:People like to hear relatable stories.
Speaker:One of, one of the sort of key things that we hear, or that I hear all the time is
Speaker:because it is considered a rare disease.
Speaker:Mm-hmm.
Speaker:, you, you, you're not talking about it with everybody.
Speaker:When you go into a setting or you go into, you know, anywhere and
Speaker:you say I have a bleeding disorder.
Speaker:There's not a lot.
Speaker:Conversation that follows that , people don't really know how to respond to that.
Speaker:And pri probably because it is rare typically, and it's not well known.
Speaker:So there's not a lot of spaces that you can go and comfortably kind of talk
Speaker:about, oh yeah, I have this experience.
Speaker:And the other person would say, me too.
Speaker:Oh my gosh, what do you do when that happens?
Speaker:And yeah, I think what stories provide.
Speaker:Is this opportunity to absorb that and go, oh my gosh, okay.
Speaker:Yes, I feel that too.
Speaker:Or I go through that too.
Speaker:Yeah.
Speaker:I know what that feels like.
Speaker:And that's why I think stories and opportunities to even come together
Speaker:when like, so for us, we try to do programming that brings people
Speaker:together to be able to do exactly that.
Speaker:And, and again, my experience always is when we come together as in person,
Speaker:. People are so excited to, like everybody jumps off of everybody's conversations
Speaker:because it's so nice to be in a room.
Speaker:Yeah.
Speaker:Where there are other people who have similar experiences and I
Speaker:think that's a real benefit to having someplace you can go.
Speaker:And read about other people's stories.
Speaker:Yeah.
Speaker:And hear about those things that, where that resonate with
Speaker:you and you go, oh my gosh.
Speaker:Or you learn something.
Speaker:Yeah.
Speaker:Even that you didn't know before or cuz I know there's some episodes of your
Speaker:podcast that talk about even parenting.
Speaker:Yeah.
Speaker:So when you're parenting and you have a bleeding disorder and,
Speaker:and I think those are great.
Speaker:If you're not a parent, maybe you find that interesting and you want to go and
Speaker:hear more about that, read more about that, or find out more about that.
Speaker:So I think, I think that stories is such a great resource in so
Speaker:many ways for people to be able to.
Speaker:Just really sit and listen and, and kind of absorb that information.
Speaker:So I, I thank you so much for coming today.
Speaker:Is there anything else that you wanna share or, I just don't wanna make sure
Speaker:that if there's anything else you wanted to expand on that you have an opportunity.
Speaker:I, I don't think so.
Speaker:I think that was great.
Speaker:Thank you so much for having me.
Speaker:I guess just the last piece of it.
Speaker:Yeah, like, I think just if women, if you know, if you, if you're out there,
Speaker:you're, you know, you're struggling with a bleeding disorder, you are working through
Speaker:that and, and you wanna share your story.
Speaker:You know, if, do so do so because you're right, it's like it can benefit
Speaker:someone else so much as well as ourselves just to express that and be
Speaker:feel we're listened to and we're heard.
Speaker:That's such a huge part of it.
Speaker:And it just encourages others, like you say, to to have that connection
Speaker:and realize that they're not by themselves going through this.
Speaker:And you can work through struggles that you're having there.
Speaker:Options out there.
Speaker:There's ways to get the answers you need and all of that kind of stuff.
Speaker:And it's just helpful to, to be able to hear that from somebody else.
Speaker:So if you're, if you're open to sharing, share, share, share . And
Speaker:I would add to that, actually, you just made me think of something.
Speaker:I would add to that too.
Speaker:It, it doesn't have to be a grand story.
Speaker:Like, I think a common thing that I often hear and feel myself is.
Speaker:I have a mild diagnosis.
Speaker:Yeah.
Speaker:Who's gonna wanna hear my story?
Speaker:Uhhuh.
Speaker:And I think that that is something that we often hear in the community.
Speaker:So to what you just said, I would add to the fact that all
Speaker:stories, anybody, somebody's going to be able to relate to that.
Speaker:It's a, it's, it's worth hearing.
Speaker:If you wanna tell it.
Speaker:So there shouldn't be any question about, I don't know,
Speaker:would my story be worth sharing?
Speaker:It's always worth sharing because there will always be someone.
Speaker:Exactly.
Speaker:Someone else will resonate with that and will appreciate hearing the story.
Speaker:So you actually made me think of that when you were talking, so thanks for that.
Speaker:Yeah, no, that's great.
Speaker:Well, thanks again.
Speaker:It's been wonderful to have you on and I'm glad you were here.
Speaker:So thank you.