Internationally Recognized Expert on Fibromuscular Dysplasia Joins UH

FMD primarily affects women, now recognized as more common than previously thought

Innovations in Cardiovascular Medicine & Surgery – Winter 2019

University Hospitals Harrington Heart & Vascular Institute have launched a new program for patients with fibromuscular dysplasia (FMD), led by one of the world’s leading experts on this vascular condition now recognized as increasingly common.

“I’m excited to start a FMD and arterial dissection program at UH,” says Heather Gornik, MD, newly named Co-Director of the UH Harrington Heart & Vascular Institute Vascular Center. “These are uncommon diseases, but they are far more common than we originally thought. We are starting a clinic to provide specialized care for these patients and with the goal of becoming a site for the U.S. Registry for FMD. I’ve cared for many hundreds of patients across the country with this disease in my career, and I look forward to building a program at UH.”

Heather Gornik, MD

“Dr. Gornik joins our internationally renowned Co-Directors Drs. Mehdi Shishehbor, interventional cardiologist, and Vik Kashyap, vascular surgeon, to form the most integrated and collaborative vascular center in the nation,” says Marco A. Costa, MD, PhD, MBA, President of UH Harrington Heart & Vascular Institute. “She brings enormous experience and credibility that will undoubtedly accelerate our mission to provide best-in-class vascular care to our community and set new national standards.”

“Dr. Gornik is world-renowned for being one of the few experts treating FMD, and she is one of the most caring and passionate physicians you’ll ever meet,” says Pamela Mace, RN, Executive Director of the Fibromuscular Dysplasia Society of America. “I’m very excited about the new FMD program at University Hospitals. Since there are so few centers available to patients, it can take months to be seen. I’m very proud of Dr. Gornik and everything she has done and continues to do for our patient community.”

One of Dr. Gornik’s responsibilities in her new role is to raise awareness among clinicians about FMD.

“For the primary care physician or cardiologist, you need to think about FMD as a possible diagnosis in order to recognize it,” she says. “FMD can cause many different symptoms. It can cause carotid bruits, high blood pressure, migraine headaches and pulsatile tinnitus – a swishing noise that the patient hears in her ears. Importantly, it can also cause arterial dissections, including spontaneous coronary artery dissection (SCAD) and carotid or vertebral artery dissection. It can cause heart attack through SCAD and can also cause stroke through cervical artery dissection. Doctors and cardiovascular specialists need to be aware of FMD and that blockages patients have in the arteries may not be plaque blockages.”

To increase knowledge about FMD and provide clinicians with common-sense guidelines for diagnosis and treatment, Dr. Gornik and national and international colleagues from the Society for Vascular Medicine and the European Society of Hypertension recently co-authored the first international consensus document on the diagnosis and management of FMD, co-published in the Journal of Hypertension and Vascular Medicine. Dr. Gornik was first author and co-chairperson for this consensus document with European colleague Dr. Alexandre Persu. The document includes consensus-based recommendations on how to diagnose and care for patients with FMD, as well the updated data from the European/International FMD Registry and the U.S. Registry for FMD. It also proposes future research directions for understanding this multifaceted arterial disease.

Dr. Gornik says her patients with FMD at UH will be part of this important research effort.

“I serve on the steering committee for the U.S. Registry for FMD, which follows more than 2,300 patients across the United States,” she says. “There are many things that we still don’t know about FMD. We don’t understand what causes it. We think there’s a significant genetic component, but also a likely hormonal component because most patients with FMD are women. Among patients found to have FMD, we also need to identify which patients are higher risk and which are lower risk, when we can perhaps worry less about heart attack or stroke.We also don’t really have high quality data on optimal medical therapy and follow-up for these patients. So there are a lot of unknowns and much work to do in understanding this disease in the years to come.”

“FMD has historically been considered a rare disease,” she adds. “But recently through the efforts of the U.S. Registry for FMD and through European efforts, we’ve realized that this is not the zebra we once thought it was. FMD is a more common disease than we initially thought. What we need is more education of healthcare providers to recognize and diagnose FMD and more research in terms of its management.”

Beyond the research questions, managing patients with FMD is multifaceted, Dr. Gornik says.

“According to registry data, about one third to one-half FMD patients get some sort of vascular procedure at some point,” she says. “That might be a kidney artery angioplasty or treatment of an aneurysm. But for many patients with FMD, the care plan is focused on medical therapy, managing symptoms and monitoring. One important thing we do for patients with FMD is screen all arteries vessels from head to pelvis to make there are no aneurysms, because 20 to 25 percent of patients with FMD have an aneurysm somewhere and some of these aneurysms are large enough to require treatment to prevent rupture.”

As she establishes her practice at UH, Dr. Gornik says she’s excited about the service she can provide to patients with FMD.

“One the things that motivated my move to UH is my confidence in the other specialists we have at UH,” she says. “It really takes a village to take care of these patients. I’ll be at the front line of the FMD program, but I’ll be collaborating with vascular interventionalists and surgeons, imagers, and other specialists. I am excited about the FMD care team we are building here.”

To refer a patient to Dr. Gornik, please call 216-286-2354.