This is where Scalf said her family is frustrated. Her eight-year-old daughter Samantha has all the warning signs, numerous symptoms and the all-important family history. Yet, Scalf feels her cardiologists aren't taking the situation seriously enough.
"She'll be sitting at the table, she'll grab her chest and her heart will just start racing," Scalf said of her youngster. "It's just the same as me." Scalf also has a five-year-old son. That age is typically too young to exhibit major symptoms, but Scalf wants aggressive testing as he gets older.
Even with years of study, Bonow admits there are areas throughout the country with less awareness of the disease. People who suspect they have the disease need to see a specialist.
While genetic testing can reveal up to 10 different genes that can mutate to cause the disease, Salberg said it's not until puberty when the thickening of the heart walls begins to show up and can be revealed on an echocardiogram. According to Scalf, doctors told the family Zack's HCM wasn't serious enough to warrant a pacemaker.
"They told my mother that the form Zack had was non-life threatening," Scalf said, adding now they've cremated his remains and worry about his children. The family could hardly find a picture of the former Maytag worker, turned college student, without one or both of his girls in his arms.
"I believe if he had a pacemaker, he'd still be alive today," Joshua Lane said.
The death of her sister and the same lack of awareness of the disease brought Salberg to form HCMA in 1996.
The problem is the disease is so variable, she explains, agreeing that an affected family can have one member with the genes but no symptoms and another family member completely debilitated with the disease.
"We don't know why it's so debilitating in some and in others so nonchalant," Salberg said. Basically, with HCM the cell structure in the heart is improper, Salberg said. There are 10 different genes with more than 200 different mutations that cause the same disease. And just because someone has the gene doesn't mean they will exhibit the disease. Carriers have a 50-50 chance of passing the disease on to their children.
"There is a misunderstanding in the medical community," Salberg said of the disease, which is more common than cystic fibrosis or muscular dystrophy. "We don't understand all the risk factors well enough to determine the risk of sudden death."
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