Are you the 1 in 50?

Today we welcome Erin Kreszel, who has dedicated herself to raising awareness, providing support, and policymaking after losing her cousin to a ruptured brain aneurysm. Eleven years ago, she and her sister founded The Bee Foundation for Brain Aneurysm Prevention.

Erin shares some surprising statistics with us, e.g. ~1 in 50 people has one, and even someone perfectly healthy and young can have one rupture, causing a hemorrhagic stroke.

Prevention is key. It is considerably easier to treat prior to rupture. She encourages us to advocate for ourselves. Ask for the MRA if you are concerned or have a family history of aneurysms.

She explains the different treatment options for unruptured brain aneurysms, such as clipping and coiling, and the importance of early detection. 

Transcript

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Instrumental

bindwaves-hosts: 0:10

Hi, my name is Kezia. I'm a stroke survivor and member of BIND. And hi, I'm Carrie, also a stroke survivor and a member of BIND. And today we're interested, we're talking to Erin Kressel because September is Brain Aneurysm Awareness Month, and Erin is the co founder and executive director of the Bee Foundation, which aneurysm prevention. So welcome, Erin.

erin-kreszl: 0:36

Hi, how are you? It's wonderful to be here today.

Brian: 0:40

Welcome to BINDWAVES, the official podcast of the Brain Injury Network of Dallas. I'm Brian White, BIND's Executive Director. On each episode, we'll be providing insight into the brain injury community. We'll be talking to members and professionals regarding their stories and the important role of BIND's Clubhouse. We work as a team to inspire hope, community, and a sense of purpose to survivors, caregivers, and the public. Thank you for tuning into BINDWAVES. BINDWAVES Let's get on with the show.

bindwaves-hosts: 1:12

Great, thank you so much. Will you just tell us a little bit about yourself?

erin-kreszl: 1:16

Absolutely. My name is Erin Kressel and I'm the co founder and executive director of the Bee Foundation. My sister Christine and I founded the organization almost 11 years ago after we lost my cousin Jenny to a brain aneurysm rupture at the age of 27 in 2013. Um, so we started the foundation with the sole goal of trying to prevent brain aneurysms and kind of grown to be one of the leading organizations in the field of brain aneurysm prevention.

bindwaves-hosts: 1:52

Oh, that's, that's really cool. I actually, um, we did a little bit of research of you and, um, I think like many of our listeners, we, we haven't met you in person and it's really cool that we're doing it virtually, but hearing that it was you and your sister that started the organization and that you're doing it after, you know, having a family loss, it's, it's very, um, yeah, strengthening and really, really cool, really. Um, but of course, like us and more specifically me and some of our listeners, we don't really, um, know too much about aneurysms. So if you can kind of explain to us like a little bit of the, what you know about aneurysms, that would be very helpful.

erin-kreszl: 2:35

Sure. Um, so the, the statistics around brain aneurysms are, um, relatively, uh, unknown to the general public. I think what most people are struck by is that actually 1 in 50 people have a brain aneurysm. So that's about, um, um, 6 million people, a little more than about 6. 7 million of the U. S. population. It's a disease that can affect any person. It's primarily adults, but it does happen in children, but it really can affect anybody. And the most common ages really are Between 40 to 60, it impacts, um, Latinos and Blacks at about two times as, as the, um, general population and, um, women are actually more at risk as well. Um, the. You know, a lot of times, brain aneurysms scare people. It's really hard to identify them prior to rupture. Um, and, um, but what is our, is kind of the, the key warning sign is people have, um, what they generally call the worst headache of their life. Um, it's what's known as a thunderclap headache. Um, and that is a sign that you do have a rupture. Um, but there are other, um, signs that, that can be experienced. Um, a lot of them are similar to ischemic stroke symptoms and, um, they would be, um, kind of pain coming through the eyes, severe neck pain, um, drooping of your eyelid. Um, and general, um, disorientation or even, um, a seizure. And, you know, I think the, the best piece of advice that a lot of our doctors have told us is if you are experiencing a headache that is different. Then any, anything else on the pain scale, you know, if you're, if you're experiencing a headache, that's on a one to 10 pain scale, you're saying 11, you need to get yourself to an emergency room and, um, ask for a, um, CT scan or an, um, MRA or an angiogram or spinal tap.

bindwaves-hosts: 4:52

Okay, well, that's good to know. Um, that's crazy statistics, though. I kind of knew them, but I don't think the general, like you said, the general public doesn't know, and that's, that's kind of what's crazy. But what maybe also are some misconceptions about brain aneurysms?

erin-kreszl: 5:08

Um, I think the biggest misconception that we try and combat is age. A lot of people generally think of stroke as something that, um, or an aneurysm as something that would affect an older person. Um, you know, half of the deaths worldwide are from aneurysms are people under the age of 50. Um, so, you know, when my aunt, when my cousin passed away, it was something my aunt, always said is like, if I had seen a billboard, if I had heard a message on the radio that these stroke symptoms and something like this could happen to my 27 year old daughter that was otherwise healthy, um, you know, I'm not sure it would have changed the scenario, but she just wished she knew that. And, you know, the, um, general, risk factors of brain aneurysms that are in the literature and online are, um, you know, smoking and drug use and, um, high blood pressure, um, experience with family members with kidney disease. And in general, the people we meet, the people we know did not have those, um, risk factors. And I think that's, that's, what's really hard. To reconcile is you have otherwise healthy individuals and young people who are in the prime of their life, not showing any signs that would would prove that they have a ruptured aneurysm that leads to a hemorrhagic stroke. And so, um, those misconceptions are what we are trying to communicate to the broad public and also to medical, um, patients. People in the healthcare field, such as EMTs and first responders and emergency medicine doctors, and to know that this is something that they should at least be aware of. look at if you're experiencing the worst headache of your life, get a scan, and also, um, ask the questions about family history. If you have, um, two or more people in your family, then, um, it is said that you are, have a higher likelihood to also have an aneurysm. And so, you know, if you have two or more people, you are eligible by insurance to get a MRA, which is, um, an MRA is essentially. It's an MRI. It's not radiation and it is a way to look at blood vessels in more detail versus an MRI gives you a very large picture, but an MRA is really designed to look specifically at, um, the, the blood vessel. blood vessels. And, um, you know, and that was a very long answer. But another misconception is, you know, a brain aneurysm is really a vascular disease. We're talking about the vessels of the brain. We're talking about an abnormality of, um, of the blood vessels where you have, uh, a, um, pocket of the vessel that gets stretched and can fill with blood. And then if there's enough pressure that can burst. And, um, so it just happens that it's in the brain when it bursts. There are other aneurysms, um, in your body. Aortic aneurysms are probably the most other, um, common aneurysm, but this is really, um, a vascular disease. So, um, I think that's just something for people to know. And then the third last misconception I'll say is, um, is people often ask and is what is a hemorrhagic stroke? So, when you say brain aneurysm, you know, the general person wouldn't. think of stroke, you know, even 10, 11 years ago, when I found out my cousin was in the hospital with a brain aneurysm, I had no idea that was related to stroke. And so, um, what, what it really is is a brain aneurysm is, is when it ruptures, then if that, that will cause a flood of blood into the brain. And that is what. And a hemorrhagic stroke is, it's that hemorrhaging of blood versus an ischemic stroke is the blockage of blood to the brain. So, um, so it's kind of, it's a, it's a type of stroke. It's a smaller, um, uh, amount of general strokes. Most strokes are ischemic, but, um, hemorrhagic, I believe are about 13%, although I need to check that number. Um, and it's just important to know that all those signs of stroke and it. apply here and we should be aware of how to get to the right medical facilities.

bindwaves-hosts: 9:48

Yeah, I think even though you said it was a lot, I don't think it was a lot. I think it's really important information to be sharing with the public. And I think that's what we're aiming with the podcast, right? To be reaching people and, um, Making them aware of all these situations. I think it's really important also, um, what you were saying about your aunt, um, you know, her saying, like, if I knew this, if I knew this, I think that's really important too, because, like, as your cousin, she was 27, if I'm right, you know, um, I was 28 when I had a stroke. So this is something that, like, It's so difficult for other people to know when you're just so young. They think it just would never ever happen to you, especially when you're healthy and you don't fit all the criteria that people believe, um, should cause these difficult situations. Um, it can really happen to anyone. Um, and just being aware is really the most important part to be able to help. Um, so right now, like I, I, When, like, I know when having an aneurysm and, like, having the headaches and getting an MRA is really important, um, like, how soon do you think you would be able to know that when you probably are having an aneurysm or, like, Or is it will have an aneurysm? I don't know too much about it. So if my questions are silly, that's why.

erin-kreszl: 11:15

No, I think there's, um, you know, there's signs of a non ruptured aneurysm and signs of a ruptured aneurysm. Um, when you have When you're experiencing that worst headache of your life, uh, or the thunderclap headache, most likely the aneurysm has ruptured and, um, that is when you need to seek, um, medical tech attention. As quickly as possible. It's kind of the, not old adage, but the stroke adage of time is, time is brain. And as fast as you can get to the, um, the right, um, medical facility, um, the better outcome you will have. Um, the, you know, I'm, I'm not gonna lie. The symptoms of unraptured aneurysm are, are hard to diagnose, but, um, you know, different type of headaches that come on that you're not used to. If you're a person that doesn't have headaches, And you all of a sudden start having them. I would encourage you to get to your primary care doctor. I encourage you to see a neurologist. Just, just explore the avenues that that could be. Um, the, you still can experience the, um, pain behind the eyes. You can experience nausea. You can experience, um, you know, drooping of the eyelid or, uh, or seizures when, um, Aneurysm has not ruptured. You know, it essentially could the pressure of the aneurysm could be building and could be pressing on a certain certain part of your brain. I think it's a fine line, but the best advice that we can give to people and this is not aneurysm, not education. This is just, you know, your body, you have to trust yourself and you have to be okay. With calling attention to it. I think, unfortunately in the U S and, um, in general, we are very uncomfortable with seeking attention and making a big deal about ourselves. And I would just, you know, encourage people to trust yourself, to advocate for yourself. Um, I didn't mention I'm a mom of two. I have a six and eight year old. I have a six year old who is very medically complex and has a genetic brain disease. And it's astonishing to me how well this country deals with pediatric, um, concerns. And when I walk into, every time I walk into a doctor's office, especially when my daughter was, was extremely little, they would say, you know, we were saying, how do I know if she's having a seizure? And they would always say, you're the mom, you know. Trust your instincts. And, um, you know, I, I have all the medical expertise regarding, regarding this, but you're the mom and I'm going to tell you, you know, better than me. that's true of yourself. That is true of yourself when you're an adult. And I think we need to take back that ownership. Yes, they have the medical expertise and they're going to guide you, but you know, yourself, just like that mother knows their dau, their, their child. And, um, I just think that that's, again, this is across all, all diseases, but I think what we, we're passionate about spreading, um, The, um, awareness factors of aneurysms and kind of alleviating some of that fear so that people will, um, be okay getting that checked out. And I just, um, you know, that, that struck me that analogy of, uh, we say moms know their children. They have that gut instinct. Well, you know, yourself better than. Uh, better than anybody, so trust it.

bindwaves-hosts: 14:48

Erin, I think that is so true. And we say that a lot here as well. I mean, listen to your body, listen to what it's saying. If it's saying I'm tired, I'm run down, I don't feel good. Well, listen to it. Stop. Take a break, figure out what's going on, and keep going. Now, I have a kind of a different question. I had a hemorrhagic stroke myself, and I was 38. So, yeah, that's one reason we have this podcast, because people don't understand how young all this stuff happens. But you've talked a lot about ruptured aneurysm. So, let's talk a little bit about Unruptured aneurysms. What, what can be done for those? I mean, obviously you don't want those to rupture and I'm guessing, I'm not going to assume, I'm guessing there's something that they can do to hopefully prevent or limit that rupture.

erin-kreszl: 15:38

Yes. Um, so, um, also important to know, most, most aneurysms don't rupture.

bindwaves-hosts: 15:44

Oh, okay.

erin-kreszl: 15:45

um, an aneurysm ruptures every 18 minutes. That's 30, 000 a year. Um, so the, the rate of rupture relative to everyone who has an aneurysm is lower. Um, and most times you are finding an aneurysm incidentally. People find them when they're pregnant, people find them when they're, they're getting other tests done, um, they find them, you know, when, um, they have complications of, you know, we've had people find them through doing different triathlons and, you know, something happens to them during that and they have to go get something checked out and they find them, um, so when you find them, there are things that can be done and that's, um, probably the biggest, you know, if we look at all of our, um, Um, Google Analytics on blogs that people search for. It's it continues to this day. Our blog title, What do I do if I have a non ruptured aneurysm is for 8 years has been our biggest, um. You know, sought after article. And, um, so you need to find a neurologist, you need to get a second opinion. Um, and, and that's just something I personally feel strongly about. And, um, there are different, there's, um, endovascular treatments you can do. So that's going through either your wrist or your groin, um, to go up through the vessel into, um, the brain and they can, um, do a coital aneurysm. So it's like a spring, a little tiny spring that goes and fills, um, fills the neck and the bulge of the aneurysm so that more blood cannot go into the aneurysm and cause it to, um, continue to weaken and, and then rupture. Um, so that's probably the most non invasive common treatment and there's lots of different, um, medical devices out there, different types of coils and springs and webs and, um, that can address different types of aneurysms that are, um, found throughout the brain. Um, now a large question is do we need to treat? And that's, um, a question that is why I think second opinions are so important because it really comes down to the experience of your doctor and what That, you know, what their view is on to treat or not treat. And, um, and a lot of times it's, it's, it's okay not to treat. And it really, it can come down to size. It can come down to location, um, you know, the other aneurysms, or if you just have one. Um, so yeah. There is definitely a big question. A big point of discussion is the more and more advanced our scanning technologies are and our awareness is, the more conversations we're having on whether or not to treat or not. Um. And then, um, so there's coiling and then, um, there's also flow diversion, which is another, um, you know, it's, it's exactly what it sounds like. It's diverting the brainflow in your brain away from that weakened blood, blood vessel. Um, so that's another option. Um, and then, um, if you have a, um, more serious aneurysm that cannot be treated endovascularly, then you, um, would do a craniotomy. where you are clipping an aneurysm. So again, rudimentary think about it like a paper clip that is, is. or staple that is clipping the part of the, the weakened blood vessel so that more blood cannot, um, go into the, the aneurysm vault.

bindwaves-hosts: 19:33

Interesting. I see that you have so much information about this and, uh, I think it's really, I think it's really good that you are having this information because of the experience that you have had with with a family member. I think it's it's amazing. It's really good. Um, I am going to take a little tiny 2 minute break. Maybe like 1 minute. Give me a minute. Just to remind our members, um, to our readers to just continue following us on, um, Instagram. On any of your social media platforms, on Instagram, on YouTube, um, every Thursday we'll continue to post in these conversations. And if you ever have any questions, just make sure to contact us on any of your social media platforms. Um, I also think, um, back to you, Emily, um, back to you, Erin, um, all this information came from your experience that you've had with your family, um, which kind of almost made you, um, build or, um, create the Bee Foundation. I know that you've been telling us a lot of the information, but can you tell us about the foundation that you started along with your sister?

erin-kreszl: 20:41

Yeah. Um, so the BEE Foundation, um, like I said, we started it, um, almost 11 years ago after we lost our cousin, Jenny. Um, My background was in, um, finance. I spent, um, 15 years in the investment consulting industry, but, um, I have an MBA with a focus on nonprofit management. Um, and then my sister. Um, is a chef and restaurant owner and in the Philadelphia area, but also spent about, um, 15 years in the biotech space and across different areas of, um. Healthcare, so I think those 2 backgrounds along with our passion to do something, um, fueled kind of a perfect storm of the creation of this organization that, um. You know, is now one of the second largest in the world that focuses on brain aneurysm prevention. And our primary goal when we focused was, let's put all of our efforts into building a scientific advisory board and building a research grant program that solely looks at prevention. There had been so much great advances in the area of treatment, all that I just spoke to you about, but, um, you know, the area of prevention had was, um, was pretty much untouched or just really at the surface that was being looked at. And, um, you know, so we wanted to build a program and encourage others in this field to do the same and really invest in prevention. And, um. When we look today at the work that's being done in prevention, it is amazing to see the growth over the past 10 years. Um, you know, so much work is being done in the area of genetics and, um, blood biomarkers, um, to really understand. We know there's a genetic component. Yale's been doing a longitudinal study for 30 plus years and it's, It's well understood that there is, um, a component that is related to your genes and passing down through family, but we need to identify which genes are, um, the markers to say that you have an aneurysm or could form one. And so there's a lot more work being done in that area. Um, there's also, um, a lot of work being done in, um, Genetics and looking at inflammation markers, um, and even, um, epigenetics that really takes into account, um, the external factors of a person and how that, um, also plays into the, um, makeup of their genes. Um, so there's just a ton more. focus and energy that has been put into this field of, um, of prevention. And it's really exciting to see. Um, so that's, that's kind of where we started. Um, and that was kind of where our, um, onus was. And then as we grew, we kind of build out. a lot of other areas. We do a lot of work on advocacy on Capitol Hill. Um, we do a lot of work with, um, um, support and that's kind of how it came to find, um, this amazing podcasting group of people. And, um, we're really proud of our support services and that the T, the TBF Hive that we have built and, um, as well as our ambassadors, um, that Jess is part of. And You know, we just have, I'm just, every time I get on a support group call, they're all virtual. I'm just amazed at the connections and the vulnerability and the trust that, um, has been cultivated within these groups. Um, you know, as, as you both know. You know, being a stroke survivor yourself, kind of being able to connect back to yourself and connect back to your community is kind of paramount in your recovery. And so, um, those are kind of the facets of what the Bee Foundation has become. It's an organization that tries to prevent aneurysms, but it's an organization that has been able to build a family around. Um, this disease that has been so overlooked in our opinion, um, over the past few decades.

bindwaves-hosts: 25:06

Erin, I totally agree with you when you say community. I mean, the brain injury community is growing so much, and I think it's so important because the general public has no clue, has so little, let me say no clue, so little clue how many people are affected by brain injury. and how many of us there are. Now, we're getting close to running out of time, but I have one more question I want to ask. We're going to make sure we put the Bee Foundation in our description so that people can find you, but I also understand you are working on a legislation called Ellie's Law. Can you Just tell us a little bit about that and how we can help.

erin-kreszl: 25:40

Absolutely. So, um, Ellie's Law is a bill that is in Congress. Um, and it, um, for the first time this year has both, um, bipartisan and bicameral support. And, um, it, and so that means it has support by the, um, Republicans and Democrats, as well as in the House and the Senate. And, um, it is a, um, bill that asks for an additional 10 million per year, um, over five years. So a total of 50 million to be put into brain aneurysm research at, um, NINDS, which is the, um, Neurologic, um, Division of NIH. Um, the bill names six different women who were affected, um, and passed away from retroaneurysms. It is the namesake of it is Ellie Hilton. Um, she was a 14 year old young girl who Who, um, passed away from a rupture on her first day of high school, um, and her father, um, and godfather were instrumental in, um, writing the bill and advocating for it on, um, On Capitol Hill and, um, Jenny Sadney, my cousin is also listed in there as well. Um, but what we are trying to do is I, I don't know the exact numbers, but I think as of right now we have about 63 co sponsors of the bill in the House and seven in the Senate, and, um, what you can do. today is if you are affected by aneurysms or care passionately about aneurysms, you can write to your member of Congress and ask them to be a co sponsor of the bill. If you go to our website, you can find an advocacy toolkit and you can download a letter and you can get a link to where you can send in a letter to request your representative to support the bill.

bindwaves-hosts: 27:42

Thank you so much, Erin. I feel like we could keep going and going and going because you have so much knowledge and I'm loving this conversation. Um, but we are running out of time, but we really appreciate your time. We appreciate your patience at the beginning of with all our technology issues, but thank you so much for being here and don't be surprised if we call on you again.

erin-kreszl: 28:02

No problem. Thank you so much for everything you're doing to bring advocacy to the brain injury community. It's so important.

bindwaves-hosts: 28:08

Yes, and agreed. And just to keep you aware and all of our listeners aware, all of your contact information, whether it be on social media, um, and your website, uh, will be available on the description, um, somewhere below in our main, um, website. And then obviously on Facebook and Instagram, uh, you will see us and this episode. So honestly, thank you so much for all of your information. And thanks to our listeners for listening us on a Thursday. Um, if you would like to contact us, um, Carrie and I, um, the podcast, uh, you can email us at bindwaves@thebind.org. And obviously, as I mentioned earlier, Instagram is@bindwaves, or visit our website, which is thebind.org/bindwaves. And again, as Kezia mentioned earlier, don't forget while you're listening or watching, um, to like, share, subscribe, and hit notify if you're watching us on YouTube. So, um, again, make sure you click all those buttons. Yep. Every Thursday you'll see us. So, until next time. Until next time.

29:16

We hope you've enjoyed listening to BIND Waves and continue to support BIND and our non profit mission. We support brain injury survivors as they reconnect into the life, the community, and their workplace. And we couldn't do that without great listeners like you. We appreciate each and every one of you. Continue watching. Until next time. Until next time.