GRAND RAPIDS, MICH. - During the 1840's, more Dutch immigrants made their home in West Michigan than any other place in the United States. With them they brought tulips, those famous wooden shoes -- and something else.
Hypertrophic cardiomyopathy (HCM), or thickening of the heart muscle.
"We are fairly certain that Andrew Kroll is the person who passed the mutation on to us," said Ken Whitcomb. Kroll is Whitcomb's great-grandfather and the mutation is only found in those with Dutch heritage -- including him.
"There is a specific gene that has a specific mutation that goes back many generations," explained Dr. David Fermin. Fermin is the medical director of Spectrum Health's HCM program, and while there are many other causes of HCM, this specific gene mutation can only be found in those with Dutch heritage.
In fact, the gene is so specific, Dr. Fermin says it can actually be traced back to one common ancestor from the Netherlands hundreds of years ago.
"The genetic abnormalities caused the heart muscle to grow abnormally thick," Fermin said. That can cause heart failure, stroke and in severe cases -- the need for a heart transplant.
The problem is you often don't know you have it and it can strike when you're very young. "It does affect people at a younger age because of its genetic nature," Fermin explained.
Whitcomb was a high school athlete but in his 20's noticed it became harder to run and harder to breath. Dr. Fermin diagnosed him with HCM several years after his first symptoms he says there is some good news for patients like him, "Overall patients with this condition, if it's adequately diagnosed and followed up, can expect to have a very good prognosis."
Whitcomb was the first in his family to be tested for this genetic type of HCM. Then his mother, who also tested positive. She got it from her dad.
"From my grandfather down, we're aware of five people who are positive that have been tested," Whitcomb said.
Now, Whitcomb has made it his personal mission to make sure others with Dutch heritage get tested for this genetic type of HCM.
He recently had surgery to remove a portion of his thickened heart lining and now feels better than he has in years. "I can exercise again now."
Whitcomb still runs a risk for rapid heart rate and ventricular fibrillation which could be fatal, but that's not going to stop him from running through life at full speed.
Because this genetic heart condition can affect the very young, Dr. Fermin recommends screening children around age 10 and every few years after until the timing is right for genetic testing.
If you think you or someone you care about may be at risk for this genetic type of HCM you can contact the Spectrum Health Hypertrophic Cardiomyopathy Program, which is a recognized center of excellence by the Hypertrophic Cardiomyopathy Association, at 616-885-5355.
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