FULL OF HEART w/Hannah & Bethany Keime

Hannah and Bethany Keime are a force to be reckoned with. I like to refer to them as the Bionic Sisters as they both have ICD’s, or defibrillators, fitted. Hannah was 16 and Bethany was 21 when they had them implanted for the deadly heart condition they were both diagnosed with (HCM or hypertrophic cardiomyopathy). Rather than sit and wallow, these girls are taking the world by storm, setting up a not for profit called HeartCharged, being massive advocates and changing the face of advocacy work. In this conversation I sit down with these incredible sisters to discuss their diagnosis, advocacy work they have done and what’s next.

ERIN: Hannah and Bethany thank you both so much for allowing me to interview you both, two of the most inspiring women I know! You were named as The Fresh New Faces of HCM Patient Leadership. How important is it to you to receive recognition like this as it shows what you’re doing is working? 

HANNAH: Thank you for asking. Now that it’s happened, I think being the “Fresh Faces of HCM Patient Leadership” has been the goal all along with our work through our non-profit organization, HeartCharged. 

We were diagnosed with HCM, or hypertrophic cardiomyopathy, a deadly chronic heart condition, when we were teenagers. And that was somewhat by chance because no one even realized we had symptoms. So when we got that surprise diagnosis, we of course started googling HCM and all we could find for people our age were children who had died. Honestly, just a little over a decade ago, most people with cardiomyopathies didn’t make it to adulthood. There was little information for us as young people. We came across maybe one Facebook group which was for much older people that we certainly couldn’t relate to and was a little depressing for us as teens. Then there were people who wanted to charge you a lot of money to get vital information and that didn’t sit right either. I guess right then we knew what we didn’t want to be and what didn’t help us. 

BETHANY: After a few years of advocating in our city and state for better outcomes for young heart patients, I felt deeply impressed to go onto social media, specifically Instagram where young people go, with who we were. We had each other but that was the extent of our community. I knew there must be others out there. I said I’m going to take some pictures where people can see the defibrillator I had to get implanted bulging out. And pictures of the meds I had to take. And pictures showing my gratitude and life. And almost instantaneously the thousands who now make up our HeartCharged community started finding us. It started with another young girl afraid of what having an implanted defibrillator would do to her body. Seeing mine and talking with me, she accepted that life-saving treatment basically because of a hashtag that led her to us. Then came a young man in Scotland that never met anyone else with our shared condition. In fresh ways, we were connecting with the new generation of heart warriors. Helping people is our reward and we love getting feedback knowing we are doing just that. 

HANNAH: True, but also it’s nice to come into your own and be acknowledged, especially since it helps expand the impact. Some people definitely just dismissed us at first as two young girls doing very different types of posts. Other heart warriors, especially younger ones or their moms in particularly, were thrilled with our fresh approach. There were some people who thought you had to stay in the box to reach people but that obviously wasn’t true. We definitely didn’t feel welcomed among people who should have been advocating besides us. Maybe we were being too real or having too much fun doing it. But since day one, we have been reaching people who had felt alienated and the general public by the millions, which isn’t easy when you are talking about a semi-depressing topic people would generally prefer to ignore.

Now, though, we have a seat at the table, a hard-earned and I’d say well-deserved seat. Our impact is vast and people embrace it. Then this last year, we received a huge recognition. We were short-listed by renowned judges and then selected by our peers from 150 global heart organizations to receive the Global Heart Hub Excellence Award. Wow. I was in Dublin for the annual meeting and when they called HeartCharged it was overwhelming and I could definitely feel it in my heart. We had already captured the attention of the public and now we felt the respect of others for what we were doing and acceptance of how we were doing it in a fresh way.

ERIN: Can you both talk a little about your diagnosis and what it meant for you being diagnosed at such a young age? 

HANNAH: Great question. It’s interesting the impact of a diagnosis in relation to what stage in life you’re at and how it comes about. As to the stage in life, if you’re a baby, the burden is on the parents and you know no other life. As an adult, you may have already realized your own mortality. But we were teenagers. I just started my freshman year of high school. Bethany was in her senior year. Our life before our diagnosis never hinted at a disabling condition. We were at a time in life where they tell you the future is yours and you are supposed to step out and grab hold. And then our condition took hold of our future, in a number of ways. 

BETHANY: And I think there is a lot to be said about what precipitates the diagnosis. For some people, there is a large event, like a cardiac arrest or a car accident. And you are forced to acknowledge a trauma. But here we are, young girls, and we thought we were healthy and we didn’t have an event. Just our aunt got a diagnosis and said we should be checked. We get checked and suddenly our whole paradigm had to shift. 

HANNAH: I had symptoms which I had told to my pediatrician but he kept telling me I was fine. I fainted a few times and had abnormal heartbeats and chest pains. Then I go to a cardiologist, just to check, and she says she doesn’t know how I hadn’t dropped dead yet. I was playing varsity basketball and doing competitive dance. She told me I wasn’t going to do that any more. 

BETHANY: There I was in my senior year of high school and I’ve just started a prestigious pre-professional ballet program. I had been training 5 to 6 days a week since Kindergarten. I was making my lifelong dream come true. And I was told I could ‘continue for now’ and then ‘dance at 60%’, as if that would keep me working. We seriously went from having a world of possibilities to stepping into the unknown. It’s as if we heard the words hypertrophic cardiomyopathy followed by a million doors closing around us and we were left searching for the doors still open to us. 


HANNAH: So true, Bethany. And the childhood, or teens, we still had left, well, they kind of got ripped away from us. My diagnosis definitely matured me. I’m 14 and realizing I’m facing my mortality. Then I was taking medications and doing procedures for old people and seeing the cardiologist with old people and was told the only activities I could do were basically ones for old people. And on top of that, we didn’t know how to make plans for the future or really if we should. 

BETHANY: So much unknown. And this at the time in life when people start figuring out their future. And ours is now this great unknown. Then when Hannah was still in her teens, she goes into sudden cardiac arrest in her sleep and is only alive because they had implanted a defibrillator in her which shocked her back to life. So she’s looking at life from the other side of death. Like she said, that will mature you and your outlook.

HANNAH: Plus we still looked the same, which was healthy. People around us don’t understand. This disease is now a big part of my identify and I’m needing to forge it into my new reality. But I didn’t have friends who could relate to that reality. I’m thankful they couldn’t, but that didn’t make it any less isolating. 

BETHANY: And somewhat depressing. Even though I don’t think we realized it at the time. We’ve always maintained gratitude as a huge part of who we are and why we do what we do. But still, we have created some posts to show our journey and we compile these videos from back when we were first diagnosed. We watch them and we cry. I cry thinking about it. I cry for those little girls and mourn the lives and futures that died when they got that diagnosis.

ERIN: Hannah, you wrote and directed a short film about a young girl dealing with HCM that was accepted into the Disability Film Challenge. Was the story based on your own experiences to raise more awareness around this diagnosis? 

HANNAH: I’m grateful for this question. It totally ties into where my life went after my diagnosis. I had been heavily involved in dance and sports and then told I couldn’t continue. When you’re on a team, you get together most every day. You spend hours and hours together each week. That’s what you do and who you are. Those are your friends. And, poof, they were all gone and I found myself with a lot of free time which I couldn’t fill with the activities I used to.

I started watching more TV and films and realized some important things. I realized the power of media and how powerful film and television is. I realized there was a complete lack of representation, especially for young heart patients. I loved seeing the stories but none of the characters ever acted like me. Also hope wasn’t as apparent as I think it is in real life or that it should be. Anyway, I was simultaneously lured into the industry because of the power it held and determined to change the industry because of the power it had yet to capture for the patient community.

I eventually got my filmmaking degree from Full Sail University. One goal I had going in was to present heart patient life, not just to represent ‘my people’ but also to let the general public know that young people have, and too often die from, heart conditions so that more young people would get checked and everyone would know warning signs. I wanted people to be educated enough to take action, but not too scared to act. 

When I was able a few years ago to participate in the Disability Film Challenge, of course, I told the story of a young heart patient. Now the finished film has to be 5 minutes or less and finished from writing the script to filming and editing in five days. I had a $0 budget and a cast of 4, my best friend, her mom, my sister, and me. We had certain rules we had to follow and certain items we had to include. So definitely a ‘challenge’. 

The story I wrote was inspired by my own experiences. Hey they say write what you know. But obviously there is more to my tale than a 5-minute film. Excitingly, I just won a grant to produce another short film which will be a bit longer and that makes me happy because there’s so much more to tell. The main character is a young girl dealing with HCM as well. The new film will delve into a different aspect of living with an invisible disability. However, the challenge film was about friendships. It also included a boyfriend which right there makes it not autobiographical. 

I actually see myself in both characters. There is the friend who is loyal despite you having other interests or people in your life or a disability or diagnosis. And there’s the girl with the limitations who is being left behind by able-bodied friends. I loved bringing an invisible disability viewpoint to the challenge. Also out of the 150 films submitted, no one else focused on heart disease and that deserve space. Heart defects are the leading birth defect. Also I wanted to show what true empathy and friendship would look like, and it is in no way the same as pity. 

Since I released it, there have been a tremendous number of positive responses and even older white British men said they felt seen in this movie. The heart community definitely loved the representation and I realized I made a good decision going to film school. Now to find someone who made a good decision and became a venture capitalist… 

Hearing so many people saying thank you for telling this story has inspired me. I wrote it where you had this ideal, great friend. And I could write it now because I do have some great friends now though from my experience in high school, my outlook then would have been less optimistic. Also I wanted optimism with a diagnosis. Too often if there is any type of heart patient story on TV, the person dies or goes into a coma. With HCM now, we can have the same chance of living, though we need treatments and care to do so. Part of that care requires standing up for ourselves in medical situations and part in personal situations. We deserve better than this girl had in her relationship with her boyfriend. We have value and add value to a relationship. 


ERIN: You are big advocates for children to be screened for heart conditions. Have you found that through your work more children are able to be screened now? 

BETHANY: We are huge advocates for that. And since day 1. And more children sure are getting screened now. Through our own local initiatives, tens of thousands of children have received free screenings in our area. It could be hundreds of thousands if the parents would opt in or, better yet, parents had to opt out, or, better yet, a heart screening was as routine and accepted as school vision, hearing, and weight checks. So we've made great strides. Our work is leading to legislation. But we’re not there yet and don’t plan to stop until the world realizes that heart conditions affect significantly more children than childhood cancers and that the deaths they lead to are most often preventable. 

We talk about this constantly. Get children screened and know. Many people tell us they now regularly screen their children because of our work. We know we have helped save many lives. The test does not hurt. There’s not a reason not to.

But there is a reason not to only screen athletes. We cannot just screen children planning to play sports at school. Heart conditions and sudden cardiac arrest do not only affect athletes and do not only happen when someone is engaged in significant physical activity. 40% of sudden cardiac arrests happen after hours, often when someone is sleeping. If a child had a pre-existing condition and didn’t know it, they may have never felt well enough to play sports. Are we leaving them to die? If a child chooses to play a cello instead of football, does their life have less value to society? This is ignorance at its worst. And beware of people doing sub-par screenings utilizing untrained people. Do it, but do it right.

ERIN: If someone is identified with a heart condition like HCM, what is included in the next steps?

HANNAH: Not always, but often, the condition can be genetic. Ours is. So get the blood-relatives tested. We know people where unfortunately someone passed away but then that led to testing which saved their siblings and even parents. Better yet when someone is identified before a horrific event and the family is able to be cared for. 

I must emphasize that it is when there is a lack of knowledge and treatment that mortality rates go up. There are so many new treatments, including genetic treatments and medications. Believe us, life does not end with a diagnosis. 

We have 7 siblings. A few have the gene but the condition is not presenting. Now we know whose children to test because the condition presents differently in different people. 

BETHANY: I will say that it is an interesting conversation but for another day about having children when you have a known genetic condition. We’ve also had a doctor bring up to us the idea of ensuring offspring do not have the gene mutation. Just the word mutation is a bit offensive the way the world sometimes defines the word ‘mutant’. I’ll just say that we are grateful for all of who we are. Also I remember a group of young heart patients being asked if they would want their children to also have a heart condition. All said no. Then when asked if they would change having a heart condition. All said no. 

You can be dealt a really hard hand from birth. Do you know people like that? There are so many extraordinarily magnificent people who face hard things. I think we need to stop focusing just on how to get rid of a challenging condition and put more effort into helping people live with conditions. One or another will always exist. Let’s make sure they live the fullest life. Let’s make sure we are the truest friends. 

ERIN: How long after your surgeries to put ICD’s in you did it take you to realise you wanted to do more and start HeartCharged - your not for profit? 

HANNAH: It was a while after mine. I got my ICD at age 16 and I was not thinking about social media. I was actually into trying to enact legislation to make sure everyone was screened at that age, alone with addressing school and community groups. It was all credit to Bethany that HeartCharged started. She really came up with the idea to use social media, particularly Instagram, to do more and that is where HeartCharged started, and it’s still our hub. So I’ll let her answer. 

BETHANY: I felt impressed to post onto social media definitely within the first year of getting my first implanted defibrillator, which was an S-ICD, the difference being that the wires go around instead of into the heart and it doesn’t pace, only shocks. It was extremely noticeable especially since I am a petite person. I was a dance major in college at the time. Then it was another year until I had the courage and pictures and plan together to put out the first posts. It was the two-year anniversary of my getting Jolt (my name for my defibrillator). PS Jolt has now been explanted and rhinestoned and sits in a case in my office. I now have an ICD. 

I felt so strongly we really need to put our stories out there. Just five years ago, there was almost no teenage or twenty-something heart patients sharing their stories publicly. Remember, it’s an invisible or non-visible disability. So basically no one will know if you don’t tell them. So why tell them?

I was like I am going to totally flaunt my Bionic Babe body and show the world. I do not care. In fact, I am proud and I embrace it. And now hundreds, if not thousands, of our friends are doing the same. Not just amongst protected groups either but for everyone to see and accept. My vision to use the power of social media and start connecting with others like us has worked since the beginning and is only ever growing. I wanted them to know, hey, I have this condition too, I get it, and I’m here for you. In reality, it started as a little page on Instagram just to see and connect. But it’s been incredible. We’ve reached people and have been blessed to help many people, especially to walk them through having ICD surgery.

HANNAH: And those same friends have helped us in a million ways as well. I had a horrible reaction to an iron infusion. One Instagram post and I had within hours the wisdom from about a hundred people with lived experience relating to me and giving me practical advice. And I had the love of hundreds more. 

BETHANY: So true. And we’ve done projects, really life-saving and really fun projects, with friends from around the world we’ve met through HeartCharged, like our Sudden Cardiac Art Exhibition. Like our music videos to teach people what to do in case of a sudden cardiac arrest. The list goes on. Our work got amplified tremendously once we began HeartCharged and shortly thereafter made it a not for profit, which can receive tax deductible donations in case anyone is inclined to amplify our work even more.

ERIN: You girls do so much advocacy work - speaking at medical centres, conferences, colleges and many many more locations. How are you changing the face of advocacy? 

HANNAH: Recently somebody told us we were making talking about CPR and AEDs cool. So that’s a change! Thinking outside of the box has made a difference. And with survival rates for sudden cardiac arrest remaining under 10%, when they could be 70-90%, well, obviously we need a new tactic. 

We are definitely known for our eclectic and entertaining style, even though we are talking about deep subjects including disability and death, well preventing death. So it’s really important people are informed. I mean, how are you going to get people to understand if you can’t get them to listen first. That’s one way we are changing the face of advocacy. For too long, messages about heart conditions have either been written in red letters on a white background or white letters on a red background. We prefer something that will capture everyone’s attention. 

BETHANY: We also brought the conversation off of Facebook and onto Instagram where younger people are more likely to engage. And our intent is not to talk at you, in red and white, but to empower you to talk for yourself. We also work to address and engage the general public. But we’re talking about heart disease which few people even know affects young people. So we take care to make our content educational and engaging.

HANNAH: I constantly ask myself how do I make something that you would watch and keep watching and feel interested in and not scare you away. I think part of the reason we can do this is because we are passionate about the topic and we are being our authentic selves, young women who advocate and create. And we talk patient to patient, peer to peer, in understandable and relatable ways. 

BETHANY: Recently we were asked again to address professionals working in cardiology and electrophysiology at a Medtronic (they make the ICDs we have) conference. We wanted to introduce ourselves in a different way. We did a rap! And from there we got more invitations and they wanted to hear our rap. We got our information out in such a digestible way. 

And we’re so glad to be young people out there doing this so people realize young people have heart conditions. And we might look ‘normal’ on the outside, but I am dealing with and even battling a deadly heart condition every day. Still I have a positive outlook and gratitude, but it’s not because I deny my realities but because I embrace them. We show the true reality and rawness of it all, but in a human way as opposed to a clinical and sterile approach. We are about the people. 

HANNAH: I find it super important not to talk over people’s heads. One thing we do is to translate ‘doctor’ into ‘patient’. I super loved speaking before medical students recently. A long-time cardiologist was with me. He said to those students, if a patient like her comes in, listen to them. She knows more about her condition than you do. She is an expert. 

BETHANY: We love that we are being treated with the respect we deserve as professionals, namely professional patients. We also collaborate with many, many healthcare professionals, again as respected partners with a shared mission. ∎​

Follow Hannah & Bethany on Instagram:
​@heartcharged