HemoLife Podcast

Women Bleed Too: Challenging Medical Stereotypes

• L.A. Aguayo • Season 1 • Episode 11

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"Women bleed too." These three powerful words capture the essence of Callie Sauter's mission as she joins host L.A. Aguayo on a groundbreaking episode tackling the unique challenges women with bleeding disorders face.

What happens when your biology textbook says your condition only affects males—yet you're living with it every day? Callie takes us back to the moment she stood up in her high school classroom to correct her teacher's misconception about hemophilia. Born into a family where her mother and aunts were among only four women diagnosed with hemophilia in the 1970s, Callie has carried the torch of advocacy her entire life, fighting against persistent medical myths and sexism in healthcare.

The conversation doesn't shy away from topics society often considers taboo. Callie vulnerably shares what it's like experiencing heavy menstrual bleeding as a young teenager with a bleeding disorder—the embarrassment of bloodstained clothes, the need for extra planning, and the emotional toll of feeling different. "Imagine you're 13, trying to fit in, and suddenly your period hits and soaks through everything," she explains, taking listeners into moments most never consider. Beyond the physical challenges, she illuminates the profound isolation many young women with bleeding disorders experience, often being the only girl in their school with their condition.

Despite these challenges, Callie's story brims with resilience and hope. Now pursuing a teaching career, she plans to educate elementary students about bleeding disorders, ensuring future generations grow up with better understanding. Her dream of creating retreats specifically for young women with bleeding disorders speaks to her commitment to building community where isolation once prevailed.

Whether you have a bleeding disorder, know someone who does, or simply want to better understand an overlooked health challenge affecting countless women, this episode offers invaluable insights delivered with honesty and heart. Subscribe to the Hemolife Podcast to hear more stories that challenge assumptions and inspire action in the rare disorders community.

Thanks for tuning into the HemoLife Podcast. Be sure to subscribe, leave a review, and share this episode with someone who needs a spark of hope or encouragement. Follow us on Instagram @HemoLife_Podcast and YouTube for updates, guest highlights, and behind-the-scenes content. New episodes drop regularly—your story matters, and this is just the beginning.

Speaker 1:

Welcome to the Hemolife podcast your gateway to transformation and empowerment. Hosted by Elia Aguayo, we're diving deep into the world of rare disorders, unlocking the full spectrum of your potential. Each episode, join us as we connect with pioneers, wellness experts and true survivors survivors they're here to share powerful stories and invaluable insights, from mental resilience to physical health, community news to life-altering strategies. At Hemolife, we provide the tools you need to excel and inspire. Prepare to elevate your life, learn, laugh and grow with us. Let's embark on this journey together.

Speaker 2:

I'm your host, la Aguayo, and today we dive into a conversation that has been overlooked for too long the unique struggles and powerful resilience of women living with bleeding disorders. Our guest today is Kali Sautter, an advocate, a fighter and a true changemaker. Callie is a passionate voice in the bleeding disorders community, using her platform to raise awareness for women with hemophilia and other rare bleeding disorders. Based in Seattle, she's known for her unapologetic honesty about the challenges women face when navigating diagnosis, healthcare and everyday life with bleeding disorders. Throughout her advocacy efforts, she champions and everyday life with bleeding disorders. Throughout her advocacy efforts, she champions the message women bleed too, breaking stereotypes and empowering young girls to own their voices and their health journeys. We're going to dive into topics that many would shy away from, such as periods, sexism and healthcare, building strong girls and Callie's own incredible journey. So, callie, let's jump. Let's start at the heart of your advocacy journey. When did you first realize you had to become an advocate for women with bleeding disorders?

Speaker 3:

Honestly, I've kind of known my entire life. My mom and her sisters were diagnosed with mild hemophilia in the 70s and at that time advocacy for women with bleeding disorders was nearly non-existent. There was three other people diagnosed with hemophilia at that time that were women. My mom was always super passionate about advocating for women and came to every doctor's appointment and made sure that my voice was heard. So I really grew up knowing that I had to carry that torch and it's been a part of my life since I was born.

Speaker 2:

If you had like five minutes with every doctor to correct a misconception about women and bleeding disorders, what would you say to them?

Speaker 3:

Honestly, I don't think I need five minutes, I just I'd want to leave it at women's bleeding disorders must be taken seriously and that it's not just a heavy period and that it can be treated and it needs to be treated, okay.

Speaker 2:

So have you kind of had some of those conversations already with your doctors to like kind of advocate?

Speaker 3:

I wouldn't say, for, like my hematologists, they're great and amazing, but sometimes other doctors aren't educated on bleeding disorders, and even that women can have them. So then it makes challenging conversations.

Speaker 2:

Yeah, I mean this has all been really new to me to kind of hear the challenges that women go through. But I mean I see it all over social media and and everyone's just talking about how like they're not getting the fair treatment and it's just so hard for me to understand. But like it's like I want to like rally for you, for y'all, but it's just like man, I don't. I don't know what that would be like, but I mean I guess if it's predominantly a male disorder, then now it's just like some women are saying like they use their children's medication or they're just like they're having to get medication anywhere that they can get it. That's horrible.

Speaker 3:

Honestly, I mean for what males could do in the community. I would say just making sure that it's known like that women can have bleeding disorders too, that they're educated and equally educated as women are.

Speaker 2:

That that would be great. Like yeah, yeah, awesome. So now let's get into something that society barely talks about enough, which is the periods. I say the periods of periods.

Speaker 3:

I'm so awkward.

Speaker 2:

But can you share what living with heavy menstrual bleeding is truly like, physically, emotionally, mentally?

Speaker 3:

Yeah, all right, I'm going to take you back to middle school. Imagine you're 13. You're trying to fit in and wear cute clothes that really aren't that cute, but you know you think they are when you're 13. And suddenly your period hits and just it soaks through everything. I mean you make it to the bathroom in time and then you're forced to walk the halls in bloodstained clothes. Wow, and you just feel like all the eyes are on you. I mean, thankfully, I only had to do that walk of shame a few times. I always had very close friends, and my brothers growing up were one of them, was the great above me, so he always was there to help out. But then you had to carry extra clothes with you. Like that was just a normal thing for me when it wasn't for my friends.

Speaker 2:

Yeah, so did you tell your friends like what you were going through?

Speaker 3:

I've been very open with hemophilia my whole life with my friends. I mean it started in kindergarten when I had my medical ID bracelet and they would point at it and be like what's that? But I mean honestly relying on that support has really helped.

Speaker 2:

Yeah Well, what advice would you give to like a young girl who is scared or ashamed to like, speak up about their periods?

Speaker 3:

That it's not something you should be embarrassed about. I mean, it happens, it's the body. Everyone knows that it happens, even if they don't want to talk about it. But sometimes the hassle it's not going to go away with age, Like for life, there's no getting rid of hemophilia at the moment longer waits for their diagnosis and fair treatment?

Speaker 2:

In your experience, or maybe with your experience talking to others, how has sexism and healthcare personally impacted your journey or from what you've heard, what I said earlier really just many non-hematology doctors.

Speaker 3:

They don't understand the impact of bleeding disorders. I mean, they might know that a bleeding disorder is a thing and usually males have it, but they need to know more than that. You know the impacts of it and the severity so that I don't have to go in and educate my doctors before I have an appointment with them about something unrelated.

Speaker 2:

Yeah, yeah. So I wonder if we still have a long way to go with that, but it's, I would say. You know, I've been in the community for about 10 years and it's just been like a slow progression. You know, like I remember just hearing a few women talk about it and then all of a sudden now it's just like blowing up and I just wonder what kind of maybe happened during that time frame. You know, maybe people are going through injuries or setbacks and being like something's going on, but I just don't have the answers to it and then you just don't find out until like last minute.

Speaker 3:

It, the answers to it, and then you just don't find out until like last minute. It's honestly, it's amazing that it's finally blowing up. I mean it's great, shouldn't be talked about. I remember in science class I think it was in like freshman year of high school in biology we were learning about bleeding disorders and my teacher was like, yeah, it's a thing that males have. And yeah, little callie did not. I stood up and I was like, no, it's that's got to be so crazy.

Speaker 2:

I'm just thinking, I'm trying to like comprehend everything as we speak, and it's just like I mean having a rare disorder and then being a girl with this rare disorder, you know, like even me, you know, I remember going through it in school and they brought up hemophilia and it was kind of a weird thing. You know, like there's just not much information on it, but I do remember standing up though, when I was a kid even, and then trying to explain more to like to the teachers that hey, I've got it and this is what I go through.

Speaker 3:

I feel like it's always been something that I've been really passionate about and that, like I was raised up, that it's something that needs to be talked about and you shouldn't hide away from.

Speaker 2:

Yeah, let's talk about empowering young girls in the bleeding disorder community. What impact do you think early community involvement can have on young girls' self-esteem and future advocacy work?

Speaker 3:

I mean, honestly, isolation is the biggest challenge. Oftentimes you're the only girl in the whole school or even school district with a bleeding disorder, so that's kind of it's scary. I mean it really sucks. But one thing that's helped, that is community involvement. I mean having friends that, even if they didn't go to the same school, I could text them and be like my God, this just happened at school today and they would get exactly what I was going through. So creating those relationships early on really is it's needed for advocacy and that self-esteem and helping that fear of isolation yeah, are there like camps or like women's only?

Speaker 2:

is there enough out there for you all to attend?

Speaker 3:

so there's a lot of like older women's, you know, retreats. I don't know if there's any retreat styles for younger girls, but there is like meetings. And there's the Brave Junior, which I was a panelist on that a couple of weeks.

Speaker 2:

That was really nice, oh nice. Yeah, I know I met a family in Iowa not too long ago and I think there was about three women in that family that have a bleeding disorder and the two of them were really young as well. So I haven't met a lot, but I know, I know you guys are out there. I think for me, like I think, do you know who Stormy Johnson is? I don't know, I know I think of her for some reason. I think she's been like a powerful advocate in the community. Another woman who reached out to me her name's Kelly Warnall, I think, and she was the one who was really excited about your episode too, but she just reached out to me about a newsletter. So there's a few women that I think of that have been like a powerful voice and really pushing for stuff. So hopefully there can be more events for even younger girls and your age bracket so you can connect. But yeah, I know isolation is huge for all hemophiliacs, I can only imagine for women.

Speaker 3:

I've been thinking about it and I mean summer camps are amazing. I love the bleeding disorder summer camps. I think it's one of the best things for kids growing up with bleeding disorders, even if they're not needed as much because they're not self-infusing. But it's just that community and building those friendships it's amazing yeah a dream of mine is to have like a retreat or like a group for young women with bleeding disorders yeah that would be so cool yeah that would be awesome.

Speaker 2:

So like talk about like yourself a little bit. You know, like what are you kind of doing, like in your career, and like what are your, your goals, and you know what can we expect from you in the near future.

Speaker 3:

Well, I'm going to school right now to be a teacher. I really want to be an elementary school teacher, and something I definitely will be talking about in my classroom is bleeding disorders. I mean not only because I have one, but if that's something I can teach my students that they might not be taught later on, that's amazing.

Speaker 2:

Yeah, yeah, it's funny. I always like I got to the point where I'll tell like any random person about it. I'll be stuck in the elevator and I'll like I've got my little pitch down, you know, and I I don't know. I just feel the need to just like tell everyone.

Speaker 3:

I was in a Lego store and I was buying the Twilight Lego set and I was talking with the worker and we were talking about Twilight and I was like, well, you know someone, I know, he's one of my friends, he's cousins with the person who wrote this book, stephanie Myers, and she based a little bit off of it off of hemophilia, because it's Reed Morgan, his cousin is Myers. I just gave a whole spiel on what hemophilia is and bleeding disorders.

Speaker 2:

That's funny. Yeah, I know I feel like hemophilia has been in some like comic books or something too. I don't know if you ever saw that I forgot what character it was, but like some character had like a bleeding disorder.

Speaker 3:

I've heard it in TV shows, and one of my friends is actually writing a book on living with bleeding disorders right now. Oh really, yeah, a little bit more of a fantasy, so not?

Speaker 2:

like you have one, that's still really cool. So, looking back, like if you could write a letter to your younger self during the hardest moments what would you say?

Speaker 3:

I think I would just tell her that everything's going to be okay and that I'm going to meet girls my age that are going through the same thing. You know, no hate to my mom and my aunts. They got me through some of the toughest times, being shoulders that I can cry on and support systems. But meeting girls my own age, that was a game changer for me and that I'd build such strong friendships with them in the being disorder community.

Speaker 2:

Yeah, so how is your health right now? Do you experience frequent bleeds or are you doing pretty good with your regimen?

Speaker 3:

I want to say I'm doing a lot better with it now. It was definitely a struggle for me in high school, but I'm putting on some medication to help with the periods and it's gotten better. Yeah, I don't experience like joint bleeds or anything really is frequently still like so often, but other than that it's been okay right now okay and how?

Speaker 2:

what about, like the mental side? Is that, does that ever get to you like? Do you ever? Or? I'm not really sure like I like for like for me on my side, like I think the mental side comes from having such bad bleeds like such bad, like joint bleeds, and then you just like you can't participate in certain activities and then so you just start to like over a long period of time you isolate yourself and then you're just like this sucks.

Speaker 3:

Thankfully, thankfully, I was never a sports girl, so I didn't suffer too much from not being able to do sports. I was more into the volunteering and reading and hanging out with friends. But there's definitely been times where, like I've had a super heavy period and I've just been like yeah, like why am I going through this? And other people like have a one day period. It's just where it wasn't fair.

Speaker 2:

I was trying to create that intro video that I'm still working on for the YouTube channel and I saw and then you, you work on cars. I thought that was really cool.

Speaker 3:

I wish I knew how to work on cars. I love it so much. I got to thank my dad for that. He has a 1968 GTO and we've been working on it together since I was a little kid and I love it so much. I took three years of auto shop in high school and considered going down the auto path for a while. But just with the toll it kind of takes on my body with hemophilia I didn't want to risk it and yeah teaching is my passion.

Speaker 3:

I love, I love helping kids and working with them so awesome.

Speaker 2:

What is one powerful thought you want every woman listening to take away about owning her own voice and her journey?

Speaker 3:

That, honestly, the periods are a fact of life. It's just there, it's always going to be there and managing them, it's going to be a vital quality of life with living with a bleeding disorder and that the help is out there. You need to advocate for yourself and go find it.

Speaker 2:

Yeah, that's awesome and I'm hoping that if other girls see or listen to this podcast, then they'll feel like they can reach out to you and talk to you and then maybe build a friendship with you.

Speaker 3:

I love that. Yeah, I mean little Callie would be so proud and so happy that I'm speaking on this important podcast and raising awareness.

Speaker 2:

Yeah, it's been really cool. We've only been launched for a little over a month now and we have like a little like close to 280, almost 300 downloads, but the reels do really really good. So, like every like so far, in the first month, it was close to like 50,000 views after the first month. So, you know, I really you know I appreciate you like sharing your message, your courage and honesty. It's a gift to the community and thank you for leading by example. I'm sure this is going to help out a lot of people and there's going to be a lot of feedback. I'm going to send them all your way, so your DMs are going to be blowing up.

Speaker 3:

Definitely do. I won't stop spreading awareness and just yelling it from the top of my lungs any chance given.

Speaker 2:

Yeah, absolutely so. To everyone. Listening advocacy is for all of us, whether you're living with a bleeding disorder or supporting someone who is. It's up to us to create a world where every voice is heard. You can follow Kali on Instagram it's at C-B-A Sauter, s-a-u-t-e-r and be a part of this movement. So until next time, keep bleeding with purpose. This is the Hemolife Podcast and I'm your host and we're signing off. Thank you, kylie, I appreciate it.

Speaker 3:

Thank you.

Speaker 1:

Thank you for tuning into the Hemo Life Podcast. Today's episode hopefully inspired you and provided valuable insights to enhance your journey. Join us again to hear more incredible stories and expert advice from our community. Make sure to subscribe and stay connected with a group of extraordinary achievers and pioneers. On behalf of LA Aguayo and the entire Hemo Life team keep pushing forward, strive for excellence and remember you are the architect of your own destiny. Until next time, stay strong, stay inspired and continue on your path to an elite life.