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Kathy Beaver, a Mary Washington Hospice nurse, hadn't heard of fibromuscular dysplasia before being diagnosed.
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MORE ON FMD
Fibromuscular dysplasia may be a rare disease, or it may be dangerously under-diagnosed
Date published: 8/2/2009

BY MEGAN WILLIAMS

It can appear in any number of places in the body. It can cause symptoms as severe as strokes or as silent as headaches. Fibromuscular dysplasia can take on many appearances and therefore, this potentially dangerous artery problem can easily go undiagnosed.

The condition, known as FMD, causes an alternating pattern of ballooning and narrowing of the arteries. It can be spotted with a CT scan or ultrasound. But because it's fairly uncommon, doctors may not order those tests.

Kathy Beaver of Dale City, in Prince William County, knows firsthand how tough it can be to diagnose FMD.

"The symptoms mimic so many other things," said Beaver, who works for Mary Washington Hospice.

When the 45-year-old went in for tests after suffering headaches and facial numbness, the results came back abnormal. She said doctors assumed the abnormality was a glitch in the test. But they redid the test to be sure, assuming the results would come back fine, Beaver said.

Instead, an MRI--magnetic resonance imaging--revealed the FMD stamp: a "beading pattern" of her carotid artery in which it alternately narrowed and then ballooned out.

"I had no idea what it was," Beaver said of FMD.

She was referred to a neurologist in Fredericksburg, who Beaver said hadn't seen a case of FMD in the 10 years he'd been practicing.

'THE CLASSIC CASE'

Dr. Victor D'Addio, a vascular surgeon at Mary Wash-ington Hospital, spends most of his time diagnosing common vascular conditions such as atherosclerosis, or thickening of the arteries. But 1 percent to 2 percent of the time, he discovers his patient has FMD.

The condition can range in severity depending on the extent of the narrowing and ballooning. In severe cases, it can cause stroke, aneurysm or kidney failure.

But some people have it their whole lives and never know because it isn't serious enough for symptoms to present.

"You could have it right now," D'Addio said. "But if there is no need to run the tests, you'll never know."

This helps explain why the condition is thought to be uncommon.

"It may be rare," D'Addio said. "Or it might be undiagnosed in many people."


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To learn more about fibromuscular dysplasia, try these sites:

fmdsa.org, the site of the Fibromuscular Dysplasia Society of America

mayoclinic.com, where you can find an overview of the problem by typing "FMD" into the search box.

Although fibromuscular dysplasia can cause narrowing in any artery, it is most commonly seen in the carotid arteries of the neck and the renal arteries of the kidneys.

FMD in the carotid artery, which supplies blood to the brain, can cause headaches, dizziness, numbness, blurred vision and neck pain.

Narrowed renal arteries can cause high blood pressure and chronic kidney failure. There is also a risk for an arterial aneurysm, which can be a life-threatening emergency if it bursts.

Studies in the 1970s by Mayo Clinic indicated that a little more than 1 percent of people had FMD. A similar study in 1989 revealed--through studying donated kidneys--that 71 out of 1,862, or 3.8 percent, had narrowing of the renal artery.

A 2004 New England Journal of Medicine article stated that less than 10 percent of people have fibromuscular dysplasia.

Doctors started and FMD registry last year to compile basic information about patients with hopes of determining the scope of the condition. There is a national FMD convention annually at the Cleveland Clinic.

-Megan Williams



Date published: 8/2/2009



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