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Patients band together via Web, persuading doctors to study their rare condition

Nefertari Nelson-Williams was about to deliver her fifth child when she suffered a nearly fatal heart attack in 2008. The healthy former model suffered a tear in a coronary artery from a rare condition called SCAD (spontaneous coronary artery dissection) that could have killed her and her baby. "I couldn't understand how something so rare could happen to me," said Nelson-Williams, 38, now a freelance writer.

Nefertari Nelson-Williams was about to deliver her fifth child when she suffered a nearly fatal heart attack in 2008.

The healthy former model suffered a tear in a coronary artery from a rare condition called SCAD (spontaneous coronary artery dissection) that could have killed her and her baby. "I couldn't understand how something so rare could happen to me," said Nelson-Williams, 38, now a freelance writer.

A decade ago, Nelson-Williams and the estimated 25 million Americans afflicted with rare disorders would likely have suffered in isolation, knowing little about their condition and living with fears of recurrence and passing it to their children.

Now, because of a cadre of Internet-savvy SCAD survivors who banded together and mobilized like a team of Navy SEALs, Nelson-Williams has joined an online patient-support community, learned more about her condition, and plans to participate in a patient-driven study to find the causes and cure for SCAD.

The self-described "SCAD ladies" accomplished something remarkable that few patients with rare conditions ever achieve: persuading a major medical research center to study their disorder.

"SCAD messed with the wrong ladies this time," said Illinois SCAD survivor Meghan Scheiber, 35, who helped organize the first survivors' reunion in May in suburban Chicago.

The driving force behind the research initiative, SCAD survivor Katherine Leon of Alexandria, Va., said the online group members are motivated "not just for themselves, but for their children and other women. They want to figure this out for everybody."

Leon figured that the SCAD survivors collectively could do more through the Internet than a few people begging overworked researchers.

"We thought if we could find these people and get their stories out, doctors would see that this is something that should be studied and researched," said Leon, who enlisted Mayo Clinic cardiologist Sharonne Hayes to study SCAD. "To me it's unacceptable that heart attacks are killing young mothers," said Leon, who grew up as a "Navy brat."

Her dream is coming true.

"We now have a research foundation and Dr. Hayes let me know that the pilot study was successful and the Mayo Clinic approved the clinical trial. The greatest value of being in this group is that it strengthens each of us the minute we know there's someone else out there."

SCAD attacks occur when one or more of the main arteries to the heart dissect, or tear, leaving the torn tissue flapping and clogging the artery. SCAD can cause internal bleeding, blood clots, heart attacks, and death.

The SCAD ladies epitomize a growing trend. So-called citizen scientists — often patients or family members — use the Internet to share medical information, form support groups, and improve research and care options.

Brian Loew, CEO of Inspire, the Princeton-based company that hosts the SCAD ladies' WomenHeart support group and 200 other online patient communities, said the SCAD ladies' experience is "an incredible story of women who found each other and not only discovered important information about their conditions and connected to each other, but empowered themselves in ways never before possible."

Susannah Fox, associate director of the Pew Internet & American Life Project, said the SCAD ladies are a prime example of the phenomenon she calls "peer-to-peer health care."

"People with rare conditions are Internet super-users," Fox said.

After undergoing bypass surgery following her SCAD attack nine years ago, Leon was told she should be grateful to be alive and should move on with her life.

"Not knowing was not acceptable to me. I couldn't stop thinking about all the other women out there having SCAD attacks. And nobody was looking into it."

She discovered the online WomenHeart community in 2005 and began finding other SCAD survivors, such as Laura Haywood-Cory of Durham, N.C., a "techie" who later launched a SCAD survivors Facebook page. They collected names and encouraged fellow SCAD survivors to share their experiences.

While each case of SCAD is different, survivors learned there are commonalities. Some suffered attacks after delivering babies. Others underwent in vitro fertilization treatments or took hormone replacement therapy after menopause, suggesting hormonal connections. Still others have fibromuscular dysplasia, a rare condition that causes the narrowing of some arteries.

Since first flexing their cyber muscles, they have learned that SCAD attacks are more common than experts initially believed. Some ER doctors who treated them didn't believe they were suffering heart attacks. They were too young, too healthy, and lacked the expected risk factors. Because of the relative rarity of the condition, some were misdiagnosed, leading to care delays, complications, and other conditions such as pneumonia. Some went undiagnosed for as long as nine months.

There is no known cause or cure. No one knows how many SCAD attacks occur annually, what percentage are fatal, or why SCAD disproportionately strikes women; 70 percent to 80 percent of SCAD survivors are female. Federal agencies that track health conditions have collected little data on SCAD.

Haywood-Cory, 44, said that when she left the hospital with six stents in her arteries, neither her physicians nor the hospital offered any follow-up information.

"Nobody could tell me whether it might happen again," the science-fiction book editor said. "I sat around stunned trying to absorb what happened."

"The WomenHeart/Inspire group was a real lifesaver for me," she said. "I was afraid to go to sleep for fear I'd never wake up the next morning. Just finding out that there are people who have survived this and led normal lives — you can't put a price on that. These people really are the sisters and brothers of my heart."

Haywood-Cory said Leon drove the research agenda, approaching Mayo's Hayes in 2009. Hayes encouraged her to develop a proposal for a pilot study. As a result, Hayes and her colleagues now are examining more than 200 SCAD survivors in a clinical study to learn more about the condition, operating a virtual patient registry and DNA testing.

With urging from Hayes, Bob Alico, a retired Scottsdale, Ariz., teacher whose wife died after a SCAD attack, launched a foundation to help fund the research.

Hayes said the Mayo researchers have "unquestionably benefited from the organizational and leadership skills and frankly, the courage of Laura [Haywood-Cory] and Katherine [Leon] and the willingness of the other women to share themselves with us. This is one of the most gratifying things I've done in my career."

"They were so well-prepared," Hayes said. "If you bring a credible proposal, it's more likely to get looked at than just the story of a single person."

Bethlehem attorney Jill Kelly McComsey, 36, a married mother of two, joined the SCAD sorority after a May 4 attack and found the Inspire group after discharge. "It's kept me grounded," Kelly McComsey said, her voice choking. "It's the only place to find people who understand what it's like, not just the fears, but also what it's like to deal with health care providers who may not know how to treat you. There's a lot of anxiety."

Nelson-Williams also grew emotional speaking about her online sisters. "At first I felt like some kind of a freak," she said. "Then I saw that I wasn't the only one. Now I've learned that SCAD is one of the top causes of heart attacks for pregnant women. I feel more comfortable knowing there are other women who have lived through this, that I'm not alone."

Nelson-Williams said she suffered a typical "man heart attack'' that included heavy panting, shooting pains, nausea, and "elephant on my chest" pressure. At first doctors misdiagnosed it as a gall bladder condition. She nearly died.

"I was in great shape. I didn't smoke or have diabetes, high blood pressure or high cholesterol and I'd never had any complications with my other four children's deliveries," she said.

In spite of the heart attack, pneumonia, and other complications, Nelson-Williams delivered a healthy girl, Shayna, one week later.