Recently Zack Lane lost his life to a little-mentioned heart disease that may afflict nearly his entire family.
He was 29. A single father, with two little girls. Now Lane's siblings, 24-year-old Joshua Lane and 27-year-old Jessica Scalf of Canton, Illinois, are on a mission to raise awareness about the disease, its symptoms and the fact that it's the leading cause of sudden cardiac death in young people.
Scalf, who for three years has had a pacemaker/defibrillator implanted in her chest, worries less now about her own sudden death than of her younger brother, her own daughter and even her nieces.
"Am I gonna die?" Joshua Lane wondered loud enough for everyone in the local Canton cafe to hear. "I'm 24. I shouldn't be thinking about stuff like this. I shouldn't have to be dealing with stuff like this. ... I was looking forward to getting older and learning new things about myself. But looking at us now, it doesn't look like that's going to happen. My brother didn't ever reach his 30th birthday."
Hypertrophic cardiomyopathy, or HCM, is diagnosed through the use of an echocardiogram that can reveal the thickening of the walls of the heart that ultimately causes the heart to not function properly. Genetic testing can diagnose the hereditary disease, but not the extent of the symptoms or how severe the 200-some mutations will appear in each individual, according to Robert Bonow, chief of cardiology at Northwestern Memorial Hospital and a professor of medicine at Northwestern University.
Bonow, the former president of the American Heart Association, said the real problem is the disease is tricky. And genetic testing to confirm diagnosis is expensive.
"It can be misdiagnosed," he said. "It can masquerade like a lot of other more common disorders."
Scalf and Zack Lane both had formal diagnoses. Their maternal grandfather also is believed to have died from the disease at 34. Their father has numerous heart conditions, but no formal diagnosis. And Joshua Lane and Scalf's daughter both show numerous warning signs.
HCM can look like a heart attack. It can appear as asthma. It can appear as a typical heart murmur. It is often diagnosed as anxiety disorder or panic attacks, according to the Hypertrophic Cardiomyopathy Association, or HCMA, founded by Lisa Salberg of New Jersey. Salberg, too, has a life-saving pacemaker/defibrillator. Four of her family members have died from HCM, and four other members currently live with it.
"Unfortunately," Bonow said in most cases, "it's not diagnosed at all until something catastrophic happens."
Bonow said the disease affects less than 1 percent of the population, however, busy cardiologists see it frequently. "Lots of the stories you hear of young athletes dying on the playing field are dying from this condition."
And most of the time they were misdiagnosed, he said.
Still, the disease has been studied for more than 50 years. Bonow recommends if any family has had a member die unexpectedly from a heart condition under the age of 55, the entire family needs to be checked for HCM. If there is any family history, "I would recommend the family get screened."
Bonow said most cardiologists require two of the major risk factors for sudden death before implanting a pacemaker device. Those factors include: family history, cardiac arrhythmia, massive thickness (a septum measuring more than 3mm), adverse blood pressure response or prior cardiac arrest. Some doctors are very comfortable with diagnosing someone with only one of these risk factors, he said.