Heart problems baffle doctors when the condition is rare

Katherine Leon, who suffers from a rare heart condition, is seen with her family. (WTOP/Paula Wolfson)

Paula Wolfson, wtop.com

ALEXANDRIA, Va. – Cardiovascular problems are not just limited to classic heart attacks. Defective valves can wear out, heart linings can be damaged and sometimes things happen that are difficult to explain.

When Katherine Leon of Alexandria, Va. experienced severe chest pains weeks after giving birth to her second child, the doctors were baffled.

“I just was this young mom who had really low blood pressure, really low cholesterol, sort of active … and this came out of the blue,” she said.

Leon remembers the EMTs did not think her heart was the problem. She was even turned away from the emergency room.

Days later, the symptoms returned and she was rushed to the hospital by her husband. This time, the diagnosis left Leon stunned.

“I had this tear right at the fork where your artery kind of splits to feed each side of the heart, so the left side of my heart was 90 percent blocked,” she said.

Leon had spontaneous coronary artery dissection, or SCAD, a rare condition in which a coronary artery develops a tear.

After a double bypass operation, the prognosis was troubling.

“Here I am a young mom and I am being told, ‘Ah well, you’ve got a rare thing, you can’t do anything about it, so just live your life,'” she said.

“And to me, that is nonsensical. If something is rare you have got to research it and find out why it kills people.”

She turned to social networking, starting with the online message boards set up by WomenHeart, a national support group for women with heart disease. Gradually, Leon began to find others around the world who had been diagnosed with the same rare condition, some as far away as New Zealand.

Leon says little, if any work, had been done on SCAD until survivors pushed for a research study in 2009. With so many voices coming together, it was hard not to take notice, she says.

Eventually, Mayo Clinic researchers initiated a preliminary study by collecting data and medical records from 12 members of the survivors network scattered around the globe.

Last summer, they launched an expanded study involving as many as 400 people with SCAD.

Only a few thousand Americans are believed to suffer an artery tear each year, with the results often fatal. About two-thirds of the victims are women. Many of them are energetic and otherwise healthy, just like Leon.

Increasingly, people with rare ailments have been turning to social networking in search of information and support. But this network is unlike any other. Patients can use it as a lobbying tool for more research by presenting themselves as an eager pool of subjects.

The Mayo Clinic researchers are trying to find out just what causes SCAD, and what treatments work best.

“The theory now is that it could be a genetic thing,” says Leon.

But because so little is known about SCAD, doctors sometimes have trouble diagnosing it.

Editor’s Note: Throughout February, WTOP will be focusing on women’s heart health, with information on prevention, treatment and reasons for hope. We also will bring you the incredible stories of survivors from the region — a sisterhood of women celebrating a second chance at life with a commitment to help others.

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(Copyright 2012 by WTOP. All Rights Reserved.)


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