After suffering a stroke at age 37, Pam Mace, of Gross Ile, learned she had a disease she’d never heard of: fibromuscular dysplasia. The diagnosis would inspire her to start a movement around the hidden threat to middle-aged women.
FMD is a little-known form of vascular disease that puts people at risk for artery blockages, stroke, coronary artery dissection and aneurysm. Because the signs and symptoms are so vague – high blood pressure, headache and swooshing in the ears – it can take years to get the right diagnosis.
Unfortunately many doctors were unfamiliar with FMD in the early 2000s and research was scare on best ways to treat it. An online FMD support group helped Pam ease her isolation and anxiety of living with the disease that few physicians specialized in. She shared in her first post: “Finding you guys was like finding a pot of gold to me. I’ve always felt so alone.’
Diagnosis motivates a movement
That online support group became the Fibromuscular Dysplasia Society of America, which Pam now leads as executive director. Years were spent educating health care providers, and in 2005 it paid off: the National Organization for Rare Disorders recognized FMD as a rare disease.
Although they were successful in raising awareness, no large-scale research efforts existed to investigate FMD. In 2007 Pam contacted U-M researchers and in 2009, the United States Registry for FMD was launched at the University of Michigan Clinical Outcomes Research and Reporting Program.
Lessons learned from U.S. registry
More than 1,300 people have shared information about their FMD medical journey for the registry, and Pam urges more patients with FMD to join to help move research forward.
An article published in the International Journal of Cardiology this year describes some key lessons learned:
- FMD often affects blood vessels in the brain as well as the kidneys.
- Imaging is required to confirm diagnosis.
- A blood vessel balloons (develops an aneurysm) or tears (dissects) in about 20 percent of patients.
- How FMD is inherited is unknown
- Half of FMD patients have a vascular procedure, usually to treat high blood pressure.
- Men with FMD are at higher risk than women to suffer aneurysm and dissection.
“Involving patients in the effort for progress is crucial, because few are more motivated to fight for change than those affected by a disease,” says Eva Kline-Rogers, R.N., coordinator of the U.S. FMD registry.
Take the next steps
The University of Michigan Samuel and Jean Frankel Cardiovascular Center is a top-ranked heart and heart surgery program among Michigan hospitals. To learn more, visit our website at umcvc.org.