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

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