Many people with Visual Snow Syndrome (VSS) report co-occurring conditions, including heart issues, migraines, tinnitus, autoimmune disorders, other neurological challenges, and more. VSS is a brain condition not visible to others, and patients often face misperceptions, systemic obstacles, and the ups and downs of managing health struggles.
In this Q&A, HeartCharged founders Bethany and Hannah Keime share their experiences with Hypertrophic Cardiomyopathy (HCM), turning their diagnosis into advocacy and highlighting lessons for navigating invisible, under-recognized conditions. This collaboration raises awareness about the intersection of VSS and HCM, the realities of living with a condition that cannot be seen, and the challenges and inspiration of becoming an advocate while embracing acceptance, self-empowerment, global patient connections, and driving impactful change.
Can you introduce yourselves and share what HeartCharged does?
Bethany & Hannah: Hello, we’re sisters Bethany and Hannah. We grew up thinking we were “normal” until our teens, when we discovered our symptoms were due to a deadly heart condition called Hypertrophic Cardiomyopathy (HCM). Undiagnosed and untreated, HCM can lead to sudden cardiac death and does not only affect athletes. Our condition is genetic. A couple of our siblings carry the gene, but no others have the condition.
Together, we co-founded HeartCharged, an internationally recognized organization with a community of 15,000 plus. Our advocacy spans life-saving initiatives, training and educational campaigns, art exhibitions, and speaking engagements. We are especially proud of our Instagram content @heartcharged, which has reached millions and showcases our journey as patients, community support, educational outreach, and sense of humor. We highlight the realities of life with an invisible disability and how to save lives in an engaging and educational way. Each day, we hope and work to prevent young people from dying from undiagnosed heart conditions.
Like many with Visual Snow Syndrome, you were told your symptoms were “normal” before learning you had a medical condition. How did moving from disbelief to a diagnosis of Hypertrophic Cardiomyopathy, and realizing you weren’t alone, affect your life?
Bethany & Hannah: The symptoms we reported to our pediatrician included fainting, chest pain, and abnormal heartbeats. He said these were normal for young girls (note: they are not, not for anyone). Then my aunt was diagnosed, and she told our mom we should be checked. She took us to a cardiologist who knew. Our diagnoses saved our lives, and we live with gratitude not just for being alive but also for our lives with HCM.
We found out how many young people die from undiagnosed cardiac conditions and sudden cardiac arrest (about 23,000 yearly in the U.S. alone) and how preventable those deaths are. So we immediately started talking to people about ending those deaths. We spoke at schools and to groups and individuals. We even tried to pass legislation when Hannah was 15.
After high school, Bethany was inspired to start an Instagram account. We had each other and knew there must be others like us. They deserved someone as well.
Bethany was diagnosed about a week after Hannah. We were both in high school and definitely in shock. You know when you are in your teens, you generally think about life and living it. We started thinking about death and escaping it. That became particularly real 10 years ago when Hannah actually escaped death. HCM is a progressive disease, and her heart had become so diseased that the doctors placed a defibrillator in her. Within six months, it saved her life when she went into sudden cardiac arrest in her sleep. Knowing the moment you would have died and being on the other side of death definitely alters your perspective. You live with a different purpose, outlook, and definition of what matters most.
Many people with Visual Snow Syndrome (VSS) have co-occurring medical conditions. For those experiencing cardiac/heart issues in addition to their VSS, can you share any advice, strategies, or resources that have helped you?
Bethany & Hannah: We’re here for you. The HeartCharged Community is large, varied, and gracious, and members are happy to share their experiences. Feel free to ask questions. They would all say to trust your own body and learn your own limits carefully. It’s fine to look up information on sites, but remember they provide only one point of view and often goes through oversight or legal review. We share the good, the bad, and the ugly because that’s all part of the journey. We want real facts that make sense to base decisions on. We want the whole story, and it doesn’t have to be pretty.
Both Hypertrophic Cardiomyopathy and Visual Snow Syndrome are invisible conditions. What are some of the challenges of living with something others can’t see, and how have you learned to cope or overcome them?
Bethany & Hannah: We think that if we saw more representation of people with invisible conditions in the media, then people would get it, and more people would report symptoms as they realize our conditions exist, even in seemingly healthy people.
Bethany has particularly faced a lot of injustice. As a day job, she works in politics. As she has been passionate about policies for people with invisible disabilities, she has faced lies from legislators alleging she didn’t have a condition, despite her having a defibrillator bulging out of her side. Doctors (luckily not cardiologists) have said to her, “You’re too pretty to have a condition.” Many believe we’re too young. This ignorance is killing people. Crazy story, but this is what it took for some people to believe Bethany: she had to have one defibrillator removed due to a recall and another implanted. The surgery caused a huge hematoma sticking out three inches. She went back to work with it. One day, the blood started seeping out. Bethany didn’t even realize it at first. Someone saw blood all over her dress. She was wheeled out as the legislators were coming out of session. Then some thought, “Oh, maybe she does have a health condition.”
Though we have come to realize that telling people you have a condition could affect your social life, it’s better they know now and show who they are now rather than later. We embrace it.
Young patients, including those with underrecognized or invisible medical conditions like Visual Snow Syndrome and Hypertrophic Cardiomyopathy, are often overlooked. What advice would you give to doctors, parents, and caregivers to ensure patients are taken seriously?
Bethany & Hannah: We know so many, many people, besides ourselves, who had symptoms and reported symptoms, just to be told anything from “that’s normal” to “you’re fine” to “you need psychiatric help”. We have an ongoing content series about this, and the stories would horrify you. Decades of disbelief and truly a type of mental torture. We try to hold up hope while acknowledging the agony. We say, while knowing how hard it is: please press on; find those that understand and will hold your hand; and know that you are not alone.
To parents in particular, you undoubtedly want to know there is nothing “wrong” with your child. But knowing leads to actions that lead to understanding and acceptance, perhaps treatments if not cures. Don’t let your wishfulness keep you from facts. It’s ok. It just is.
To caregivers, it’s hard to be constantly mindful of the unseen. We understand. But could you try? We are constantly reminded of our condition. Don’t drive us to constant complaints or incessant silence to be heard.
To doctors, you know medicine and we know ourselves. Let’s fuse our knowledge and acknowledge each other’s expertise. Truly neither is necessarily greater, and certainly together we can accomplish more.
Both Hypertrophic Cardiomyopathy and Visual Snow Syndrome are invisible conditions. What are some of the challenges of living with something others can’t see, and how have you learned to cope or overcome them?
Bethany & Hannah: We think that if we saw more representation of people with invisible conditions in the media, then people would get it, and more people would report symptoms as they realize our conditions exist, even in seemingly healthy people.
Bethany has particularly faced a lot of injustice. As a day job, she works in politics. As she has been passionate about policies for people with invisible disabilities, she has faced lies from legislators alleging she didn’t have a condition, despite her having a defibrillator bulging out of her side. Doctors (luckily not cardiologists) have said to her, “You’re too pretty to have a condition.” Many believe we’re too young. This ignorance is killing people. Crazy story, but this is what it took for some people to believe Bethany: she had to have one defibrillator removed due to a recall and another implanted. The surgery caused a huge hematoma sticking out three inches. She went back to work with it. One day, the blood started seeping out. Bethany didn’t even realize it at first. Someone saw blood all over her dress. She was wheeled out as the legislators were coming out of session. Then some thought, “Oh, maybe she does have a health condition.”
We also live in a scars-out kind of way. We’ve been blessed to be in some art campaigns flaunting our scars and bionic bulges. We embrace it. Though we have come to realize that telling people you have a condition could affect your social life, it’s better they know now and show who they are now rather than later.
As sisters with Hypertrophic Cardiomyopathy, do you experience the condition differently, similar to how Visual Snow Syndrome affects people uniquely?
Bethany & Hannah: Even though we are sisters with the same genetic condition, that condition has affected us in many ways very differently throughout our patient journey.
At her diagnosis appointment, our pediatric cardiologist told Hannah she didn’t know how she hadn’t dropped dead yet. She was immediately told to stop sports and dance and to take the elevator instead of the stairs at school.
At her diagnosis, Bethany had just started virtual high school as she was accepted into a prestigious pre-professional ballet program and danced full-time six days a week. As her HCM was less severe and understanding her desire to continue, the doctor cleared her. She eventually earned her degree in dance. However, the HCM progressed and she was unable to dance professionally.
Bethany was always ill, but with Hannah being “iller”, it seemed to everyone, even herself, that she was well. She wasn’t. And being less ill than another doesn’t mean you aren’t dealing with your own issues or that you deserve less care and compassion.
Hannah was originally told not to exercise, then the findings showed HCM patients should. Hannah was told to exercise but was not tolerating it well. An echocardiogram of her heart showed why. While HCM generally means a hypertrophy, or overgrowth, of the septum in the left ventricle, in Hannah’s case, she has concentric hypertrophy and all the walls are overgrown. Lesson: listen to your own body and its limits. They won’t be the same for everyone. Doctors may need to look closer at how your condition affects you. The time to report, be tested, and receive care is now. If your doctors don’t know that, educate them or get new ones.
Many people with invisible conditions, like Visual Snow Syndrome and Hypertrophic Cardiomyopathy, feel isolated. How has HeartCharged helped you build community, and how could that experience relate to people with other invisible conditions?
Bethany & Hannah: When we were first diagnosed in our teens, we looked up hypertrophic cardiomyopathy (HCM) and found only stories of young people who had passed away. Besides each other, we never met anyone outside of our family with HCM until we created HeartCharged. Now we’ve met thousands and consider them our closest friends. Some live on the other side of the world, and some were here in our neighborhood unknown to us. Early on, we met a young man in Scotland. He had never met anyone else with HCM, let alone anyone young. Having a similar condition bonds you. Distance need not be a barrier anymore.
We also strongly suggest that we don’t have to sub-categorize ourselves by a specific condition or treatment. Our community is not just people with our heart condition, or even a heart condition. Please join us. As patients, we have a lot in common. As people, we should come together.
What have been the biggest challenges of advocating while managing your own health, and how have you navigated moments of burnout or frustration in your work?
Bethany & Hannah: The fatigue is real. We spend a lot of time at appointments. Arrhythmias and fainting happen literally any time of day during any activity. These things slow us down, take up our days, and bring some mental anguish. Meanwhile, they give us compassion. We work with many people with various health challenges, and guess what? They have a flare-up or have to go to the hospital, and we absolutely get it. We sometimes feel sorry for people who don’t get it.
There is so much to say that we start getting burnout. It’s as if you’re never done and there’s always someone else to save. Sometimes it’s hard to see the wins when the loss column is so long.
Our biggest frustrations by far have been in the political arena. With our heart health as it is, we seriously can’t take much anymore. In high school, within a year of being diagnosed, we authored a state bill and had a sponsor for heart screenings. We figure it would have saved the lives of 16,268 kids from then until now. Between the American Heart Association lobbying legislators not to support it and politicians trying to co-opt the bill, it didn’t pass.
This year, we passed our state law for AEDs [Automated External Defibrillators] in every school. We wrote a bill and three years later, only a small fraction of the bill passed. Three years of politicians pretending there was hope crushed our souls.
We’re choosing to navigate away from politics. There are other arenas to fight in.
Were there moments when your medical condition felt like it defined you, and how did you move beyond that?
Hannah: Absolutely. After looking up my condition following my diagnosis, all I saw were kids my age who had died playing sports like I had. Seeing kids die from something I then knew was preventable really struck a chord in my heart and my sister’s. We immediately began advocating. Because of that fierce advocacy, I wore my heart on my sleeve. Since I was doing presentations at schools, everybody knew me as the girl with the heart condition.
When I became an adult and moved away from home to work, go to college, and serve a full-time ecclesiastical mission, I wanted the opportunity for my heart condition not to be the first thing people knew about me. I wanted them to get to know there was more to me, and I didn’t want their pity. I wanted to be viewed as a full person who, on top of all my other traits, happened to be battling this condition.
Our dear friend, a visual artist and a heart patient who created the Sudden Cardiac Art Exhibition with us, said it well recently. She said, “I want to be an artist who has a heart condition as opposed to someone who has a heart condition who creates art.” Deciding which goes first matters. We’re Bethany and Hannah, and, by the way, we have a heart condition.
In film school, I was often asked why I was there and what films I wanted to make. Again, my heart appeared on my sleeve. I said it was part of my heart journey. I studied to be able to create films that bring representation and make invisible conditions seen.
These days, much of my everyday life and work is tied to heart advocacy, so it isn’t easy to hide. Though it’s not that I couldn’t, I just don’t. Now I am fine with my heart condition defining me because it bleeds into a lot of what I do.
Your heart is a vital organ, so no wonder being a heart warrior is a vital part of who I am. And they say the eyes are the window into your soul, so perhaps sharing life with Visual Snow Syndrome, a brain condition that affects vision, may be something that opens everyone’s eyes.
We’d like to add that we believe acceptance and how you handle your condition matters as well. We started HeartCharged with pride and determination to share our journey to hopefully help others. What happened is, we definitely helped ourselves.
We were blessed to have each other in this diagnosis. We have seven other siblings, and being together in this has definitely made our bond stronger. But what a two-edged sword. Yes, I have my sister, but oh wait, my sister also has a deadly heart condition. But it is what it is, and we thought everyone deserves a sister to go through this with. That’s why we created HeartCharged. Many people have found us while in the hospital or getting ready for surgery. They’ve told us they wouldn’t have made it through without the support. Those days, when we share a definition with others and it makes life better for us all, we embrace the condition.
If you could speak to your younger self, or someone newly diagnosed Visual Snow Syndrome and/or Hypertrophic Cardiomyopathy, what advice would you give about navigating life, advocacy, and acceptance?
Bethany & Hannah: Life doesn’t end with a diagnosis; life as you know it undoubtedly will. Many things set you off on new paths, opportunities, enticements, and obstacles. Find new passions. Hannah had participated in sports and dance, at and away from school. The day she was diagnosed, the doctor said she had to stop it all. That freed up a lot of time, and she began watching a lot of TV and movies. A couple of things happened. She found happiness in film and noticed there wasn’t much representation of under-recognized disease. She went on to get her degree in film and is now working to bring representation to the medium. One day, Hannah is planning on winning an Emmy (EGOT is the crazy goal). We like going to the beach and then eating sushi or pasta. We’d love to travel to someplace like Italy or the South of France to be by the water and just soak up the sun.
All the doors haven’t closed, just some you thought you’d walk through. Look around. Go the other way.
For more information, please visit GetHeartCharged.org.