Sports for Life is a non-profit 501(3)-c organization formed to bring public awareness, education and community empowerment to combat Hypertropic Cardiomyopathy (HCM). Alexis Levi co-chairperson of Sports for Life wears many important hats, including mother, registered nurse, entrepreneur, and former athlete; she is proud to be the first African American woman to own a professional basketball team, the Las Vegas Stars. Alexis’s goal is to raise awareness in the athletic area as well as to educate every athlete to the signs and symptoms of HCM. The Sports for Life Mission: To provide a high profile avenue for coaches, students and parents to learn about the signs and symptoms of HCM the leading cause of Sudden Cardiac Arrest among athletes and children.
SZ: In layman’s terms define Hypertrophic Cardiomyopathy (HCM).
AL: Hypertrophic cardiomyopathy (HCM) is the leading cause of sudden death or cardiac death (SCD) in young athletes. HCM is a disorder that causes the heart muscle to become thick. The thickening makes it harder for blood to leave the heart, forcing the heart to work harder to pump blood. HCM is frequently asymptomatic until SCD. Prevention requires screening. Screening by medical history and physical exam are ineffective. HCM is detected with 80% accuracy by echocardiograms, combined with pre-screening by electrocardiograms (ECG’s).
SZ: What percentage of the youth athletic population in the United States is affected by this condition?
AL: It varies. In the last few years the incidences of HCM have risen. I was doing some research the other day and discovered that at the end of January 2012 there had been ten deaths from HCM that were noted. It seems to be increasing. What we are trying to do at Sports for Life is to hone in on the kids from second grade at ten years old and then follow their health into high school. While younger kids are likely to have a more severe form of HCM the condition is seen in people of all ages. HCM is generally regarded as the most common cause of SDC in athletes.
SZ: What are the most common symptoms that parents, athletes, and coaches need to be aware of regarding this condition?
AL: Shortness of breath, dizziness, the athlete was exerting him/herself at a regular rate and becomes more fatigued than usual. Those are common symptoms and those symptoms can be created by many things. So a lot of the time the coaches, parents and kids don’t recognize the symptoms to be tied to something wrong with their heart. There is an assessment form that can be downloaded through the Hypertrophic Cardiomyopathy Association (HCMA).
SZ: Are the symptoms significant enough that they would prompt the child to say to their parent that, “It’s not just that I’ve run really hard but it feels like I am exerting myself and getting light-headed.”
AL: Light-headed and dizziness seem to be symptoms that are talked about because the blood is not getting to the heart. Younger kids just don’t really know how to add that up. I have a friend whose son just passed away not too long ago and that’s what kind of pushed me into hyper gear to begin working on this education for athletes, parents and coaches. We’ve put together a great board of people and I’ve been talking to a lot of ex-pro athletes as well as pro athletes. These people are coming on board to for us because sometimes awareness only comes when you know people that have the media’s attention are saying something.
SZ: Is this disorder age related?
AL: There are two different points of view. In some instances it’s said that it’s age related and they are seeing more incidences in high school. But when you begin doing research then you notice it is happening in younger children. There isn’t yet a registry for reporting this death. A group of us are trying to start a registry. But there is no real registry that says these are all the kids struck down by HCM. There are estimations.
I was talking to people at Parent Heart Watch and they told me that most of the time when HCM is reported if it’s not reported by a physician in a hospital or a Emergency Medical Technician (EMT) then it usually doesn’t show up. If it’s reported in a camp or summer camp those numbers don’t necessarily show up as having passed from this disorder.
SZ: Which organizations are conducting studies or following studies of this disorder?
AL: The one that I’ve seen that has the most in-depth research is the Hypertrophic Cardiomyopathy Association (HCMA). We use their questionnaire for the kids we work with. HCMA participates on the legislative side of things. They are trying to get legislation passed that every athlete that plays an organized sport whether it’s in a high school or an athletic association would also have to be tested to participate. HCMA is working at the legislative level along with the Sudden Cardiac Arrest Association (SCAA). Our organization SFL on the other hand is more focused on the grass roots level. One of the things that we are doing that’s different from other organizations is we are trying to get face to face with the kids - athletes. SFL is focusing solely on the athletic population because of my background and the folks we have on our board it is a natural fit for us.
SZ: What events prompted you to take up the call to educate, parents, athletes and coaches about this condition?
AL: A few things happened. I own a basketball team Las Vegas Stars and had received quite a bit of publicity and made a lot of relationships in the sports world. It happened that when I became aware of HMC a few people had sent me some articles and prompted me to take a look at this issue. Coinciding with this Good Morning America did a big story on the subject. That prompted the sports community to take a look at this issue. I already had an organization along with an associate of mine called Sports for Life. One of the things we found is that there were many people who thought this outreach needed to be done. What really prompted me to take more steps forward to put together this program was I met Lisa Salberg, Founder and CEO of the Hypertrophic Cardiomyopathy Association. When we met she told me things that were happening on the legislative side and what the challenges are. Our fights are different but similar. She’s fighting on the legislative side and I’m fighting to get into schools and to get coaches to recognize that they need to know more about this condition, as well as get information to parents and athletes.
SZ: Are there medications for this condition?
AL: There are medications. This link at the Hypertrophic Cardiomyopathy Association will offer readers information regarding current drug medications that are given when a person has some or all the symptoms of HCM.
SZ: Do you have any favorite tips, quotes or stories that guide you on your path to educate people about HCM?
AL: The guiding light for me if you will, is that kids deserve to live. They deserve to live in a way where they aren’t afraid. I would love for the sport community to embrace this cause.
Alexis thank you for taking the time to chat with me about HCM and your programs effort to bring awareness to this condition.
Alexis Levi can be contacted at http://www.wix.com/alseg1/alexislevi
702.517.9990
*Featured guests are not current nor former clients of Susan Zaro
*This article can also be read @ www.examiner.com
*Featured guests are not current nor former clients of Susan Zaro
*This article can also be read @ www.examiner.com
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