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Young woman’s stroke launches Fibromuscular Dysplasia movement

Pam Mace, founder of FMDSA, urges patients to join patient registry

A stroke at age 37 is rare for most any one, but as an active adult who had adventures like scuba PamMace3.fwdiving and skydiving, it just didn’t make sense to me. I knew my body.

The day it happened, I woke up with a headache. After going for a 3 mile run later that day I noticed my pupils were unequal. I should have gone to the hospital right away but I didn’t. I just didn’t think I could have a stroke. But I did.

It would take a year before my doctors could explain why I had a stroke so young: fibromuscular dysplasia. The diagnosis would inspire me to start a movement around a rare vascular disease that affects women in the prime of their lives.

The two most common symptoms of fibromuscular dysplasia are headaches and high blood pressure. Think about how many people are walking around with those symptoms that could have FMD but they are treated as every day symptoms that millions of Americans have.

It’s why FMD has been called the rare disease that isn’t. FMD has always been considered a rare disease, and is still classified as a rare disease. But because it manifests so differently it’s likely underdiagnosed. Some research suggests as many 5 million Americans have FMD.

The tricky thing about FMD is that not everyone has a tell-tale episode. With many people the disease is found incidentally. For me, the big alarm that my arteries were abnormal was the stroke in 2000.

Because I waited to go to the hospital, my blood pressure continued to rise. I had not been diagnosed with high blood pressure. I was healthy and exercised every day. But the prolonged spike in pressure caused me to tear three of the four arteries that supply blood to the brain.

Because of the tears I then formed aneurysms (balloon-like bulges in the artery wall) along with other complications. Had I gone to the emergency room at the first sign of symptoms, one would think that I would have prevented further damage. I am very fortunate to have survived without any disabilities or problems.

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Three years later, in 2003, the Fibromuscular Dysplasia Society of America was founded to organize a community of patients, medical professionals and researchers around this public health issue.

When I was first diagnosed I felt lonely, frustrated and depressed. There is no known cause or cure for FMD. But we’re learning. The malformations in the arteries caused by medial FMD can appear on imaging like a “string of beads.” The beading increases the risk for artery blockages, high blood pressure, stroke and aneurysm.

It was once thought that 75% of FMD cases were in the renal arteries, those leading to the kidneys, but we now know FMD can be found just as often in the carotid/vertebral arteries and in almost any artery in the body.

I’m one of the first FMD patients to join the FMD registry, it was an exciting day. By collecting information about our family history and medical care, researchers are learning more about the causes and triggers for FMD.

I’m so passionate about the disease. I don’t ever want anyone to ever go through what I did. I couldn’t possibly not get involved in finding answers and helping other affected patients live their best lives.

Take the next steps:


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Pam Mace is executive director of the Fibromuscular Dysplasia Society of America. She is a former emergency room registered nurse now living in Grosse Ile, Mich.

 

 

 

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The University of Michigan Samuel and Jean Frankel Cardiovascular Center is the top-ranked heart and heart surgery program among Michigan hospitals. To learn more, visit our website at umcvc.org.