When it comes to heart health, heart attacks tend to get the spotlight.
While 805,000 people die from heart attacks every year in the US, there’s a lifelong genetic disorder that could be lurking in the background, going completely undiagnosed.
It’s even been dubbed a “silent killer,” taking the lives of young people who appear to be the picture of health.
If you had a family member suddenly die before the age of 40, you may want to ask your doctor about hypertrophic cardiomyopathy (HCM).
A condition that affects about 1 in 500 people, HCM causes the heart muscle to become thick and stiff, making it harder to work properly.
This can obstruct blood flow to the rest of the body, and lead to complications like heart failure, a heartbeat that’s too fast or slow or even sudden cardiac arrest.
It’s the most common inherited heart disease — a child of a parent with HCM has a 50% chance of developing it later in life. And younger people are more likely to experience sudden death as symptoms may not appear before death.
Only 100,000 people have been diagnosed, meaning around 85% of the population could have this issue but not know it, according to the Heart Failure Society of America.
Despite it being inherited from your parents, the exact cause is still a bit hazy.
“Although genotyping is important, it’s not the full story for HCM,” said Dr. Theodore Abraham, an echocardiographer at UCSF Health. “For half of the people with severe HCM, we haven’t found the causative gene. And just because the gene is present doesn’t mean you have the disease.”
Early diagnosis is critical for treatment and prevention, but standard heart ultrasounds couldn’t quite find this hidden condition.
“Before, patients with HCM and other forms of heart disease would come in, get an echo and often be told, ‘You have nothing wrong — I’ve looked at your echo and it looks great,’” Abraham said. “They’d come back 10 years later and be in really bad shape.”
You could also be at risk if you have any family members with an implantable cardioverter-defibrillator (ICD) or pacemaker, or who have had heart failure, stroke or a heart attack.
Even if you don’t have a family history, some symptoms to keep an eye out for include lack of energy, shortness of breath, chest pain, fainting or swelling in the feet or ankles.
Although symptoms don’t always appear in younger people and often develop later in life, doctors can do a diagnostic test to determine if you have HCM.
But while there are no medications to treat it, light to moderate physical activity and regular visits to the cardiologist can help monitor the disease’s progress.
