Fibromuscular dysplasia, or FMD, is up to 10-times more common in women than in men, but it's often overlooked because patients and their doctors have a hard time identifying the symptoms.
Nurse Mary Lou Lucas has spent her career helping others understand their medical problems but she was stumped when doctors diagnosed her with fibromuscular dysplasia.
"'You have what? What is that?' A lot of people that I worked with never heard of it," Lucas said.
FMD happens when fibrous tissue inside a person's artery walls builds-up and creates a string of beads.
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It can cause stroke, heart attack or aneurysm.
"There was a complete blockage in one of my vessels. Oh, I was scared to death," Lucas said.
Dr. Heather Gornik, a vascular medicine physician at Cleveland Clinic in Ohio, wants to get the word out about this serious, but not well-known, disease.
"It's a condition that affects mainly women. About 95 percent of our patients are women," Gornik said.
Migraine headaches, high blood pressure, dizziness, and a swishing sound in the ears are the main signs.
"I think it's really sad that it takes three or more years for a patient with symptoms to get a diagnosis," Gornik said.
Gornik helped start a registry that tracks patients with FMD.
She wants to help other doctors learn the signs so they can identify the condition.
Medication and surgery are often needed to treat it.
And the sooner it's diagnosed the better.
Lucas eats right, exercises and sees her doctor regularly.
"I would encourage good follow-up and proactive health care," Lucas said.
Now, her disease is under control and she wants to keep it that way.
FMD can be diagnosed with vascular imaging tests, such as ultrasounds, CT scans or MRI scans to look at the arteries.
Doctors aren't sure what causes the condition but suspect that hormones, genes and other factors play a role.
FMD is most common in women between ages 40 and 60, but it can also occur in children and the elderly.
Although rare, men can also have FMD.