Heather Gornik, MD, Hosts Novel Fibromuscular Dysplasia Support Group Connecting, Empowering Patients Around World

Innovations in Cardiovascular Medicine & Surgery | October 2024

Individuals living with fibromuscular dysplasia (FMD) worldwide are coming together for education, engagement and advocacy thanks to a novel virtual support group hosted by University Hospitals Harrington Heart & Vascular Institute in collaboration with the Fibromuscular Dysplasia Society of America (FMDSA). Participants throughout the United States, Canada, Europe, Australia, India and Bangladesh have logged on to attend, with the recent Summer 2024 session hosting 440 registrants.

Originally envisioned as an in-person resource for the local FMD community, meetings transitioned to a virtual platform during the pandemic.

Heather Gornik, MD

“When I joined University Hospitals in 2019, forming a support group for patients with FMD was one of my top priorities,” says Heather Gornik, MD, Director of the Fibromuscular Dysplasia & Arterial Dissection Program, Co-Director of the Vascular Center, and the John B. Lally Family Master Clinician in Fibromuscular Dysplasia and Vascular Care, at University Hospitals Harrington Heart & Vascular Institute. “We initially decided to take the group online in 2020 because we could not meet in person. There also was a great need to provide information about the interplay of COVID and FMD to a broader community. What began with a dozen patients in a small conference room at one of our community hospitals has blossomed into a quarterly virtual forum that enables us to help patients around the world live their best lives despite this disease.”

A member of FMDSA’s Medical Advisory Board, Dr. Gornik is a renowned FMD clinician. She has worked closely with FMDSA’s Executive Director Pamela Mace, RN, to raise awareness by expanding the support group and attending local, national and international events.

“Pam is a tremendous partner who has led FMDSA for nearly 20 years,” Dr. Gornik says. “With her background in nursing and as an individual living with FMD, she is uniquely gifted at spreading the word and developing content that is meaningful to our attendees.”

International Community Eager to Understand FMD

FMD is a rare systemic vascular disease that causes artery narrowing — often presenting a string of beads appearance — aneurysms and dissections. Risks include hypertension, pulsatile tinnitus and migraine headaches. More severe adverse events include heart attack due to spontaneous coronary artery dissection (SCAD) and stroke due to carotid or vertebral artery dissection or a ruptured brain aneurysm. Although the true prevalence of FMD is unknown, it is significantly more common in women and is believed to be underdiagnosed because the disease is often clinically silent or incidentally discovered.

“Many countries have no clinical centers or formal organization representing patients with FMD,” Mace says. “What Dr. Gornik is doing for the international FMD community is bringing so much hope to patients who lack resources or access to the latest in management, treatment and research.”

She notes that interest is so great that patients in other time zones will wake during the night to participate in the virtual forums. Informational portions of the sessions are archived on the UH Harrington Heart & Vascular Institute website and available through FMDSA. Patients can share these resources on Facebook or similar online FMD communities.

Connecting Patients to FMD Experts

Each session begins with interactive polling (e.g., Where are you from? What brings you to the group?), patient stories and FMDSA updates. That is followed by an expert guest speaker and ample time for questions. Each year, Dr. Gornik devotes one meeting to summarizing some of the most important published FMD research.

L to R: Esther Kim, MD, Pamela Mace, RN and Heather Gornik, MD.

“We have an expert team of collaborators on our multispecialty UH FMD care team, so it has been rewarding to introduce these wonderful colleagues to a broader audience,” Dr. Gornik says. University Hospitals expert providers have addressed topics for FMD patients including:

• Interventional cardiovascular care | Mehdi Shishehbor, DO, MPH, PhD
• Management of brain aneurysms | Yin Hu, MD
• Maximizing kidney health | Aparna Padiyar, MD
• COVID updates | Keith Armitage, MD
• Headache management | Deborah Reed, MD
• Women’s health and menopause | Jean Marino, CNP

“In addition to highlighting colleagues at UH who are part of our FMD care team, we have been able to host international guest experts in the field,” says Dr. Gornik. Those colleagues include Jeffrey W. Olin, DO, vascular medicine specialist at New York’s Mount Sinai Medical Center and Steering Committee Chair of the North American Registry for Fibromuscular Dysplasia, and Esther S. H. Kim, MD, Director of Center for Women’s Cardiovascular Health at Charlotte’s Atrium Health and Principal Investigator for the iSCAD Registry.

The next meeting is scheduled for Nov. 19, 2024. Santhi Ganesh, MD, a physician-scientist at the University of Michigan and an international expert on the genetics of FMD and SCAD, will give the guest presentation.

For more information, contact Dr. Gornik at Heather.Gornik@UHhospitals.org.

Contributing Experts:
Heather Gornik, MD
Director, Fibromuscular Dysplasia & Arterial Dissection Program
Co-Director, Vascular Center
John B. Lally Family Master Clinician in Fibromuscular Dysplasia and Vascular Care
University Hospitals Harrington Heart & Vascular Institute
Professor
Case Western Reserve University School of Medicine

Pamela Mace, RN
Executive Director
Fibromuscular Dysplasia Society of America