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

Teen travels from Greece to Ann Arbor for vascular surgery at U-M’s C.S. Mott Children’s Hospital

After missing nearly a year of school in Crete for severe stomach pain, 14-year-old girl with complex, rare vascular disease finds treatment at Mott

After a year of living in pain, high schooler Niki Karpouza is back to herself and enjoying her summer in her home country Greece.

After a year of living in pain, high schooler Niki Karpouza is back to herself and enjoying her summer in her home country Greece.

The stomach pain 14-year-old Niki Karpouza was experiencing was so excruciating, she couldn’t eat, had to give up gymnastics and ultimately missed 350 days of school in her hometown on the island of Crete, Greece.

The culprit: a rare vascular condition that had led to the narrowing of multiple intestinal arteries and their branches, preventing blood from flowing to her intestines like it was supposed to.

Several doctor visits and medications in Greece didn’t help. Doctors there reached out to the University of Michigan’s C.S. Mott Children’s Hospital that has one of the leading multidisciplinary programs for comprehensive treatment of vascular disease. The program is an international referral center for children with complex vascular disease and handles approximately 80 percent of cases requiring surgery in the U.S.

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I need a cardiologist … now what?

U-M Call Center professionals make the process smooth

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The U-M Call Center team (from left): Cheryl Palmer, Sandy Coffey, Andrea Navarre and Ashley Chang.

Your primary physician just recommended you see a cardiologist for a suspected heart condition. So where do you go from here?

If you decide you’d like to see a University of Michigan Frankel Cardiovascular Center cardiologist, the process is straightforward, beginning with a call to one of our Call Center professionals.

Call Center professionals are here to help guide you through the process of identifying the right cardiologist.

Getting started

“We start by gathering as much information from the caller as possible,” says Andrea Navarre. This includes a diagnosis (if one was given by the primary doctor) and a description of any symptoms the person is experiencing. “We realize that finding the right doctor can be overwhelming. That’s why we’re here to provide guidance and to point each caller to a cardiologist who aligns with his or her specific diagnosis or needs.” Continue reading

Aneurysm repair leads to celebration of life and love

"Right then I was confronted with: Is this your last day?"

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Heart disease survivor Greg Goss is back to living life.

What’s the best place to begin a story about a medical emergency that few survive that leads to a marriage proposal?

Greg Goss was on his way to an event when severe pain led him to change his plans. Instead he went to the emergency room at the University of Michigan Health System.

He was in an exam room talking to others, but when he was asked to stand he starting screaming and hollering from pain. That’s when, he says, the aneurysm ruptured.

Facing a challenge as a team. Trusting instincts. Those are the strengths Greg and his family would rely on to overcome the unexpected:  an aneurysm that had silently created dangerous pressure on the wall of an artery until it burst. 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