It is Family: A Conversation with Saylor Behrens

When Saylor Behrens’ biology professor told her class that hemophilia is the result of incest, she grew angry. She knew better. Her younger brother, Wyatt, has hemophilia A.

It wasn’t just the false narrative being spread that made her indignant- it was the sheer lack of awareness about hemophilia that morphed her brother’s bleeding disorder into a scary, incredibly rare condition that could be brushed off. 

Wyatt’s hemophilia had simply been a fact of life for her family for years. So Saylor decided it was time for more people to become aware of this condition that affects thousands of people in the U.S. alone.

She set the record straight in an open letter titled “Hemophilia is not ‘rare’ to us,” which was published this year on World Hemophilia Day.

The foundation was thrilled to sit down with Saylor to talk about her op-ed and life with a loved one who has a bleeding disorder. Watch the video or read a transcript of the conversation here.

Tell us a little bit about yourself.

My name is Saylor Behrens. I was born and raised in Lincoln, Nebraska. I am currently a junior at UNL and I am following an English and biology track. I’m hoping to be an optometrist one day, so an eye doctor.

That’s what the field that I’m currently in. And I’m the oldest of three siblings. I have two little brothers. Their names are Beckett and Wyatt.

Could you tell us a little bit about your brother’s diagnosis story?

Of course. So there’s kind of two lenses to my brother’s diagnosis story: Through my mother’s eyes and my childhood eyes. It all begins with my cousin on my mother’s side. My aunt was pregnant before my mom.

And when my cousin was born, he was misdiagnosed as not having anything. And then later when he turned three, he was having a lot of bruising and doctors were curious as to whether he had leukemia or hemophilia. And then we found out that it was hemophilia. My mom was pregnant with me at the time, so she knew then to get tested because since my aunt was a carrier, my mother had a 50/50 chance of being a carrier, which also means I have a 50/50 chance of being a carrier.

So she tested my brother when he was born and he and my cousin both have mild type A hemophilia. Their liver produces some factor eight, but not enough. But it’s also not so severe to the point that either of them need ports. They just do the injections when they need them.

And as a child, I really just remember hemophilia being family camp. Or we would go to the hemophilia walks and educational conferences on the weekend where my parents would get to learn about hemophilia. But I just got to do a lot of fun crafts and interact with other siblings and people who had hemophilia.

So I will admit as a child, I didn’t really know completely what was going on, but that kept it a fun thing for me. I have fond memories of interacting with different families who have hemophilia.

Your article went up on World Hemophilia Day. Was that intentional? And if it was, what did it mean for you to have it going out on World Hemophilia Day?

Yes, it definitely was intentional. I know when I was talking with the editors who were gonna publish my work, we decided to hold off until the 17th to have it go up just so that it would be on a day that’s meant for spreading awareness.

And I think to me, World Hemophilia Day reminds me to stay connected with the community. And it reminds me that the world is so much smaller than we think it is, and that even though hemophilia is a rarer disorder, there are so many people, even in small-town Nebraska, who have it.

And so I imagine it’s extremely prevalent, more so than we think.

Your article talks about some of the misinformation that your family’s had to navigate surrounding hemophilia- namely, the false belief that hemophilia is the result of incest. Why do you think beliefs like this still persist?

I definitely think it all started back at a time where genes and genetics weren’t fully understood. That’s the root of it. And people would come up with their own theories and assumptions about the royal family I know are really prevalent. And I think that over time, those beliefs have just continued to be taught.

I know in my university, just a year ago in my freshman biology class, my professor was still teaching hemophilia as being a result of incest, or part of incest. And I think as long as that misinformation is being spread in schools, it’s gonna be continued. That’s gonna be the continued belief and the perception that people have.

And so I think that it’s extremely dismissive. I think it’s offensive. The sooner that we start to reverse that false narrative, the better. Because it is still being taught in schools. And I don’t want anyone to feel the way that I felt when I heard that professor say that.

The big sister in me got so defensive hearing my professor say that it’s a result of incest because it could have been my little brother sitting in that class. It’s so harmful for someone who is already having to take different curves in their life.

I think the main reason is that people still don’t really know what hemophilia is.

And it’s still rare and new in a sense. We’re still learning it, we’re still understanding it. So there’s just a lack of information.

That was a big learning curve for me, and it’s definitely been really useful getting to see the world through that lens. 

What do you wish more people understood about what it’s like to live with a bleeding disorder or to have a loved one who lives with one?

I think the biggest thing for my family is that my brother’s hemophilia is mild, and so it’s very manageable and very treatable. I think there is still a misconception that all hemophilia is severe; and my heart goes out to people with severe hemophilia because it is so much work to manage and keep track of.

But I think it should be known that hemophiliacs are resilient and they’re capable of doing things as much as anyone else is. My younger brother has to avoid high contact sports and he definitely has to take steps to prevent injuries from happening. But as long as he infuses his factor, and as long as he’s keeping an eye on his joints and that he’s being cautious about what he does, he can live a beautiful, wonderful life.

And on most days, he doesn’t even think about his hemophilia. Truthfully. I mean, it’s something that has just always been a part of his life, and so it’s not really this new scary thing to him as it is to other people. 

What do you wish you could tell people who have a loved one who has a blood or bleeding disorder?

When you’ve just found out about a diagnosis, it’s so scary when you don’t know anything about it. So I urge those people to stay curious. Remember that you are not alone in this. There are so many people out there who have experienced it.

I know Google will tell you that it’s this rare, never-before-seen thing, and that it’s so scary. But there truly are so many people who are living and experiencing this, and I urge you to take a deep breath, inform yourself, inform your loved ones, but also just remember that NHF is here and there are local chapters, and there are groups that you can reach out to that will make it an easier process.

As someone who loves somebody in this community, how do you feel about the organization continuing to support members with conditions besides hemophilia, like VWD and rare disorders? Is it important for you to see them get the same support and success as the hemophilia community?

Of course! I think it is just as important, if not more important. I know VWD affects men and women equally, all races equally. It’s a human problem. It can happen to anyone.

I think that it is so important that those people are getting the same advocacy and the same treatment options and accessibility. At the end of the day, we’re all fighting the same battles. They’re similar symptoms and it’s so important for people to remain educated and empathetic toward people with these conditions because it’s such a difficult thing to navigate if you’re alone in it.

It’s so much easier if we act as a community. Things don’t have to be identical for us to look out for one another.

NHF is celebrating its 75th anniversary. Going forward into the next 75 years, what would you like to see more conversations about within the blood and bleeding disorders community?

I think that NHF has done a wonderful job giving resources to our community. I urge them to continue doing research and finding greater accessibility to treatment options and government-level advocacy for people with bleeding disorders. Advocacy for women in with bleeding disorders or with children with bleeding disorders is huge as well.

I know I’ve spoken with my mother about her experience- and it’s really, really scary to have a child with mild hemophilia because as a toddler, they can’t voice if they’re hurting. And if it’s not severe, it’s that toss up between “Do we treat? Do we not treat? Is it worth using factor?”

Coming out with clear guidelines for different types of people with hemophilia, especially for children and for women on when to treat and when not to treat, and when you should be concerned as a parent.

I also think about public perception of hemophilia.

NHF has one of the biggest platforms to spread correct information. And I never realized that people at the collegiate level and in universities would still not fully understand hemophilia. I think it would be really cool to find a way to go to different genetics classes and biology classes at the university level and almost fact check. Like, “Hey, it’s alright to talk about genes and genetics, but don’t use hemophilia and incest as your example if it’s not gonna be correct, because it’s really, really harmful.”

I would just urge NHF to use their platform for for good as they have been.

Is there anything else you wanna add before we wrap up?

I just wanna say thank you. I appreciate you guys publishing my story and giving me this platform to talk on. It’s been really, really, really healing for my family. I’ve gotten a lot of feedback that we’re just happy to have someone listen to our stories and to connect with other people.

Read Saylor’s op-ed, “Hemophilia is not ‘rare’ to us” here.

Source: National Hemophilia Foundation, June 2023.