Motivated patients make a difference in demystifying fibromuscular dysplasia
Pam Mace’s diagnosis with fibromuscular dysplasia has become a rare disease movement. She helped leverage the first large-scale research of the little-known blood vessel disorder by asking the University of Michigan Health System to coordinate the U.S. FMD registry.
To recognize Rare Disease Day on Feb. 29, all week we’re telling stories of our patients and researchers who are tackling rare diseases all across the health system.
The FMD registry has information about more than 1,400 patients who are at risk for artery blockages, stroke, coronary artery dissection and aneurysm. Because the signs and symptoms are so vague – high blood pressure and headache – it can take years to get the right diagnosis.
It would be a year after suffering a stroke at age 37 that Pam Mace learned she had FMD, a hidden threat faced mostly by middle-aged women. Learn more in the CVC HeartBeat Blog http://umhealth.me/1RiqeYt