FMD: Racing toward an answer

Motivated patients make a difference in demystifying fibromuscular dysplasia

Pam_Mace_blogAfter 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. Continue reading

U-M doctors lead research studies on rare heart diseases

February 28 is Rare Disease Day

researcher blog

Researchers at University of Michigan are leading the way in identifying and developing treatment for rare cardiac diseases.

Rare diseases affect almost 25 million Americans. Worldwide, there are more than 6,000 rare diseases. The University of Michigan Frankel Cardiovascular Center is a leader in treating many rare heart diseases. As an academic hospital, U-M researchers are at the forefront of studies aimed at identifying and treating unique cardiac diseases.

According to Dr. Santhi Ganesh, a specialist in cardiology and genetics at the University of Michigan, “Our doctors take a collaborative, multidisciplinary approach to research projects as we share knowledge.”

Dr. Ganesh believes that more rare diseases are being identified because of advancements in the study of genetics and new technologies. “It’s important that we continue to fund research into the study of rare diseases. We need to keep up in this important area.”

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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. Continue reading