Early diagnosis of rare heart condition helps save woman’s life

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CLEVELAND-If you have never been a runner, you probably won't understand why someone would want to get out and run on a cold and windy day.

34-year-old Rachel Place loved it. She was quick too.

Running a marathon in less than three hours, she even flirted with the idea of ramping up her training to see if she could qualify for the US Olympic trials.

But that was before her leg decided it didn't want to cooperate.

“Really the only thing that I had was sporadically as I was running my leg would get extremely heavy; it was almost like a cement block was wrapped around my leg,” Rachel said. “I physically could not keep going. I would stop it would go away."

Since she ran about 100 miles a week, both she and her doctors thought it was a running injury.

She saw foot specialists, physical therapists, and chiropractors for almost two years before even walking became impossible.

“In July of 2014 that feeling became permanent; it didn't go away anymore. It happened while I was walking, when I was going up a flight of stairs; it just felt like a cement block was wrapped around my leg," Rachel said.

Doctors at the Cleveland Clinic diagnosed Rachel with Fibromuscular Dysplasia or FMD.

It's an uncommon condition where abnormal cells develop in the arteries forming dangerous blood clots or tears.

And it's more likely to develop in ordinarily healthy young women like Rachel, who had a large clot in her femoral artery and one in her neck.

“The most common findings we've seen in patients with FMD are headaches, abnormal whooshing sounds in the ear; migraines are very common. Occasionally, the more concerning symptoms in FMD are strokes early heart attacks," Cleveland Clinic FMD Researcher Doctor Maya Serhal said.

She said treatments vary from not so common surgery to remove clots to working on lifestyle changes and anti-clotting medications like aspirin.

“We would screen them head to pelvis to make sure there are no other vessels involved and being aware of the vessels involved is the biggest thing we do in FMD clinic."

In Rachel’s case she had to have surgery to remove clots in her leg.

Because of FMD she may never run again because the conditions has left her with high blood pressure.

But Rachel hasn't given up staying healthy and active and she encourages all women to not to take symptoms lightly.

She told us, “I can't lift weights or do yoga but I can walk; I have been walking half marathons and marathons and 25Ks and hope to walk my first marathon this April."

Symptoms of FMD vary from person to person, but Doctor Serhal says early migraines and headaches, high blood pressure in particular, in young women and a whooshing sound in arteries that doctors can pick up with a stethoscope.

More severe symptoms are heart attacks, strokes or aneurysms.

Rachel said these may be indicators that a screening for FMD might be considered.

**More heart health stories here**