Fibromuscular dysplasia registry results presented at ISET

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Results of a registry presented at the 24th annual International Symposium on Endovascular Therapy (ISET) suggest that more than 90% of fibromuscular dysplasia sufferers are women, and high blood pressure and headache are the most common symptoms.

Fibromuscular dysplasia, frequently goes undetected and can lead to high blood pressure, stroke and aneurysms. Although considered a rare disease, studies suggest close to 4% of Americans‰Û¥more than 5 million people‰Û¥have the condition. Fibromuscular dysplasia frequently is undiagnosed because few doctors know to look for it. It is often found by accident, when people undergo imaging for other conditions, or after a stroke or a transient ischaemic attack.


The registry enrolled 339 patients at seven US centres, 91% of whom were female. More than 95% of patients suffered one or more symptoms. Among those, the most common were:

  • high blood pressure (66%)
  • headaches (53%)
  • rhythmic ringing in the ears (30%)
  • dizziness (28%)
  • a whooshing sound in the ear (24%)
  • neck pain (22%)

Of all patients, 19% had suffered a tear in an artery, most often in the carotid and 17% had suffered an aneurysm, or bulging, most often in the renal artery.


Fibromuscular dysplasia location was assessed in 309 patients and was most common in the renal arteries, affecting 69%, followed by the carotid arteries, affecting 62%. Many patients have the condition in both types of arteries.


“It is important to diagnose the disease because 20% of people who have fibromuscular dysplasia have an aneurysm somewhere in their body which could leak or burst, a life-threatening condition,” said Jeffrey W Olin, director of vascular medicine at the Mount Sinai School of Medicine, New York, USA. “Doctors need to look for fibromuscular dysplasia, particularly in patients younger than 35 who have high blood pressure or migraine-type headaches.”


Untreated, fibromuscular dysplasia can lead to a tear in the artery and can be deadly. The presence of the condition in the renal arteries, on rare occasions, can lead to permanent kidney damage.


According to Olin, although it is unclear what causes fibromuscular dysplasia, about 10 to 12% of people with the condition have a close relative who has it. “There are many, many unanswered questions about fibromuscular dysplasia,” said Olin. “We are hopeful information gathered through the registry will help us answer those questions, spread the word about how common this condition is and help people get treatment earlier.”