Screening teens for hypertrophic cardiomyopathy
On October 13, 2008 New York Rangers draft pick, Alexei Cherepanov, suffered a fatal heart attack and died during a hockey game. Only 19 years old, Cherepanov is the latest in a long line of young elite athletes who have lost their lives to Hypertrophic Cardiomyopathy (HCM), a genetic heart condition.
HCM basics (more detailed info here)
- It affects 1 in 500 people
- Symptoms include shortness of breath, chest pain, fainting, dizziness and sudden death
- Diagnosis is made by 1) echocardiogram (heart ultrasound) and 2) ECG (measurement of the heart’s electrical impulses)
- It cannot be cured, but it can be managed using a combination of lifestyle modifications (i.e. avoiding strenuous activity), medication (i.e. beta-blockers) and surgical interventions (i.e. ICD implantation)
- There are currently 15+ genes known to be associated with primary HCM (more detailed info here)
The question of population screening
Strenuous physical activity is dangerous for someone with HCM, especially because sudden death can be the first symptom. This has prompted some to suggest that all young adults should be screened for HCM (using echocardiogram and/or ECG) prior to being enrolled in competitive sports. An Italian study found that screening teens for HCM, and disqualifying those affected from participating, eliminated the risk for sudden death from HCM in young athletes.
Is screening teens for HCM something we should be doing in North America? Certainly within the context of the Canadian public health care system, it could be feasible. Sports have been a big part of my life, and I can’t imagine being told as a teen that I was “disqualified” from participating. However, being left out certainly pales in comparison to suffering a heart attack and possibly sudden death. Eighteen year old David Carle of Denver University knows this all too well.
In the current climate of preventative medicine, it seems to me that screening for HCM should be high on the public health priority list. The questions then become a) at what age should this screening occur b) how would this be implemented and enforced and c) when does prevention go too far? Anyone care to weigh in?
Photo Credit 1: http://www.bleepingidiots.com/2008/10/alexei-cherepanov-passes-away/
Photo Credit 2: http://www.flickr.com/photos/extrasupercutie/689313791/
HER NATURE HIS NURTURE 
I absolutely believe in screening for HCM starting at the age of 12 or 13. I lost my son to this disease at 15 two years ago. He was asymptomatic so we had no warning of his condition until his sudden death.
Now we know all the family members with this heart abnormality.
I have encouraged all youth that I know to be tested. Males and females!
I not only carry the gene…I have the condition as well.
Tamara Baff
Tamara,
Thank you so much for your comment and for sharing your story. I learned from your blog that you are a teacher. Do you think that screening for HCM could ever be incorporated into the school system? As far as you know, has this ever been a topic of conversation at your school?
Thanks again.
Allie
I encourage all youth that I meet to talk with their own doctors. It seems to take government and that includes school boards an inordinate amount of time and discussion to bring any reasonable change to the status quo.
My son’s death was an anomaly and unless there are more unfortunate events such as ours…there will always be a way of pretending to some degree that it isn’t going to touch the community as large.
it was certainly interesting to read your post.
Thanks,
Tamara
As a survior, of SCA caused by Hyper trophic Cardiomyaphy at 18 years old I believe all middle and high schools, and colleges should do heart screenings during the physicals. If I had known about my disease early, I could have prevented Sooo much!
Danielle– thank you for your comment. Screening in schools would be a great comprehensive solution, but I agree with Tamara that it is likely very difficult to put in place. In the mean time, the more we spread the word, the more good we can do. Thanks for sharing your story here.
Allie