When Caroline Floyd and Natali Pulver met for the first time recently, they had plenty to talk about.
The women Floyd lives in Rock Hill, Pulver in SouthPark are two of several people in the Charlotte area who have fibromuscular dysplasia, or FMD, a rare disease. A national registry has enrolled approximately 600 patients with the disease; however, it is unknown how many total patients are diagnosed with fibromuscular dysplasia.
Feb. 28 has been designated Rare Disease Day.
Floyd and Pulver originally met on FMD Chat, a website that connects those with FMD from all over the world. Its private Facebook page has become a place where they can connect with others who share their experience.
Pulver said the first thing she did after her diagnosis was conduct an online search for support groups. She now goes to FMD Chat regularly with questions about her health.
The anxiety of (the symptoms) was the worst part, Pulver said. I had a support system (of family and friends), but no one could say, I know how you feel.
FMD is characterized by abnormal cell growth in the walls of medium and major arteries. It often goes undetected and can cause heart attacks, strokes and other serious symptoms. FMD is most often diagnosed in women between age 30 and 50.
Because so little is known about some rare diseases, doctors often cant provide patients much information.
Using social media gives us this community of fellow patients, so that whether its a good day or a bad day, we have a group of people who understand what its like to be a patient with FMD, said Sarah Kucharski, founder of FMD Chat, who lives in the N.C. mountains.
As much as our friends and loved ones want to understand, they simply cant.
Hard to diagnose
Floyd, 36, and Pulver, 32, share remarkably similar stories.
Both are slim, healthy and athletic mothers of young children who, seemingly out of nowhere, developed high blood pressure. Both then survived life-threatening medical events caused by dissected arteries leading to the brain. Floyd had an undiagnosed mini stroke, and Pulver had dissected arteries that required a stent.
Two weeks after having a baby in 2006, Floyd fell at home after feeling as if someone had hit her in the back of the head with a baseball bat. She couldnt walk or speak.
Her husband was in the driveway washing their car. Floyd crawled to the door and pushed it open, lying in the doorway until he saw her.
Floyd was rushed to the emergency room, where she was given an MRI, which showed no cause. A neurologist told her at a checkup three days later that she must have fainted.
They look at you like, Youre just dramatic and crazy, Floyd said. But I always knew in the back of my head that something was really wrong.
By 2010, Floyd still suffered mysterious episodes and Googled her condition. She took her BlackBerry to her physician to show the doctor her online research. A scan of her arteries led to an FMD diagnosis three weeks later.
Pulver, a stay-at-home mother of children ages 2 and 4, felt a painful pop in her neck while out to dinner with girlfriends in early 2012. She went to an urgent-care center several days later and was sent home with muscle relaxers.
She was back in the ER a few days later with chest pains.
Her FMD might have gone undiagnosed but for a medical student who listened to an artery in her neck just before a doctor was about to discharge her. The student heard a sound that indicated a blockage in her arteries. A scan revealed that she had dissections or separations of the artery walls in her vertebral arteries. An FMD diagnosis followed.
The benefits of connecting patients with rare diseases go beyond providing much-needed support. Patients conversations can lead to helpful information about the disease as they compare symptoms and medical histories.
Floyd, who also has two other rare diseases, said shes found other FMD patients who also have another disease.
FMD Chat continues to serve as a growing international support group for people who may not know anyone in person who has the disease.
Theres no point in having an FMD support group (in person) because if youre lucky, you might have one person show up, Kucharski said. This provides a place for patients, whether its a good day or a bad day, to celebrate it, vent about it, and rely on each other for support and information.
For information about FMD support, visit http://fmdchat.blogspot.com.
Marty Minchin is a freelance writer. Have a story idea for Marty? Email her at email@example.com.
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