Heart attack survivor Laura Haywood-Cory, one of my heart sisters and a fellow “graduate” of the WomenHeart Science & Leadership Symposium at Mayo Clinic, emailed me with great excitement last week:
“The Wall Street Journal interview with Katherine, me and Dr. Hayes is now live!!”
This WSJ piece tells the inspiring story of how heart attack survivor Katherine Leon, with Laura’s help, convinced a world-famous hospital to launch research on the rare and deadly heart condition they had each survived: spontaneous coronary artery dissection, or SCAD. (See also: When Your Artery Tears).
This diagnosis mainly affects women and can be fatal. Here’s an excerpt from the Journal story called “When Patients Band Together: Social Networks Spur Mayo Clinic Research”:
“When Katherine Leon began feeling crushing chest pain six weeks after the birth of her second child, doctors were perplexed about what was causing her symptoms.
“Ms. Leon, of Alexandria, Virginia, was then 38 years old and healthy, and doctors didn’t believe she was having a heart attack. She saw her physician and made two visits to the emergency room. Finally, doctors decided to perform an X-ray angiogram to check for arterial blockages. What they found was so serious, she was whisked to the operating room within 30 minutes for bypass surgery.
“The diagnosis: Ms. Leon had spontaneous coronary artery dissection, or SCAD, a mysterious condition in which the internal layer of an artery separates from the outer wall, creating a fissure where blood clots can form and potentially block blood flow. SCAD is so rare* that little research has been done into what causes it, who is at risk and what treatments are most effective.
“Many SCAD patients are active, healthy women for whom a heart problem seemed highly unlikely, according to patient stories posted on a community support forum on Inspire.com hosted by the advocacy group called WomenHeart: The National Coalition for Women With Heart Disease. Katherine Leon, whose SCAD episode occurred in 2003, explained:
“I didn’t smoke. I didn’t eat fatty foods. I exercised. Why in the world would my body just fail? I’ve been told so many times it was just bad luck or a fluke. Nobody wants to hear they’re a fluke.”
“To connect with other SCAD patients, Ms. Leon began posting on WomenHeart’s online patient forum. She hatched the idea of using the patient group to push for a research project into the disease in the fall of 2009.
“Around the same time she met online Laura Haywood-Cory of Durham, North Carolina, who had suffered her SCAD in March of that year. Together, the two women moved the project ahead.
“Feeling that SCAD patients were hard to follow on a message board dealing more generally with heart disease, Ms. Haywood-Cory started a new topic thread to link them together. She headlined the post: “All the SCAD Ladies Put Your Hands Up!” - a take-off on the Beyoncé hit “All the Single Ladies.” The thread quickly began filling up with stories.
“Some women had a SCAD episode around the time they were pregnant; for others, the circumstances were unexplained. Some were associated with migraine headaches, others with a menstrual period. Some were treated with bypass surgery, some with stents and some without any major intervention.
“The next month, Ms. Leon and Ms. Haywood-Cory both attended the annual WomenHeart Science & Leadership Symposium for Women With Heart Disease at Mayo Clinic, where they met cardiologist Dr. Sharonne Hayes, director of the Mayo Women’s Heart Clinic.
“Armed with about 80 stories from the SCAD message board, Ms. Leon asked Dr. Hayes to consider a study, which she tentatively agreed to a couple of weeks later.
“The SCAD message board was filled with enthusiasm. Sharon Sutton, age 43, wrote from New Zealand:
“It would be such a relief for all of us to have some real, current, relevant research done on SCAD, and so finally the possibility of some much-needed answers.”
“Within a week of a final agreement to launch a Mayo Clinic pilot study, 18 people had volunteered. Mayo found it was able to get all the information it needed, although some patients needed to prod their doctors and hospitals to forward it to the researchers.
“Among questions Dr. Sharonne Hayes hopes to address in a larger study:
- Is there a genetic mutation that puts patients at increased risk of SCAD?
- Is it associated with other conditions such as connective-tissue disorders?
- Do some of the treatments for SCAD make the condition worse?
“Dr. Hayes explains:
“Mucking around the artery with a catheter can cause a small dissection to get worse. And although men also suffer from the condition, SCAD could help explain why heart disease in women is different than that in men.”
© 2011 Wall Street Journal
UPDATE: Mayo Clinic is now launching a bigger trial with 200 SCAD patients and an equal number of their close relatives to research who gets the disease and why. If you’ve been diagnosed with SCAD, you can find out if you are eligible to participate in this research by phoning the Mayo study coordinator directly at (507) 255-0473.
Here is some practical advice from Katherine Leon (one of the SCAD survivors featured in the Wall Street Journal piece) about participating in this type of cardiac research:
“No Mayo Clinic visit is required or even necessary to participate. This is a virtual study! The first! We are making history, ladies, so let’s do it up — as virtual as we wanna be!!!! There is NO cost to participate in the study. It is free. Just fill out the application forms, fax, and relax until you are notified by Mayo staff of next steps. And remember – the time frame on this is long. No need to stress.
“When the time comes, Mayo Clinic will reimburse reasonable fees and incurred costs for mailing and venipuncture (blood draws) that you have done in your local community as part of the DNA biobank study. Your family members who join that study would have their expenses reimbursed as well. If you wish, of course, you may make an appointment and go to Rochester, MN. But the cost of optional consultations and medical care at Mayo Clinic would be your responsibility. And as we know, that means it truly is up to our individual insurance companies.”
* NOTE: SCAD IS NOT “RARE” – Spontaneous Coronary Artery Dissection is sometimes referred to as “rare”, but Mayo Clinic cardiologist Dr. Sharonne Hayes now describes this condition as “underdiagnosed” or “infrequent”, especially when discussing heart attacks in younger women. (Mayo Clinic recently saw three SCAD cases in one day, one acute and two as outpatient consultations).
♥ Have you been diagnosed with Spontaneous Coronary Artery Dissection? Find out if you are eligible to participate in two new SCAD studies at Mayo Clinic.
♥ Watch this 5-minute video of cardiologist Dr. Sharonne Hayes explaining more on this exciting research, plus this 3-minute video from Mayo Clinic explaining SCAD and how survivors Katherine and Laura kick-started this research on the diagnosis they shared.
♥ Read SCAD Ladies Stand Up: Stories of Patient Empowerment, the special report from Inspire.com and the WomenHeart support community where Katherine and Laura “met” online for the first time. It features a number of interesting first-person accounts from SCAD survivors plus an introduction written by Mayo’s Dr. Sharonne Hayes called “Traditional Research Methods Turned Upside Down: The Untapped Potential of ‘Patient- Initiated’ Research in the Study of Rare Diseases” (including a link to this Heart Sisters article listed on the report’s resource page!)
♥ Learn more about SCAD at this patient blog, or at When Your Artery Tears: Spontaneous Coronary Artery Dissection, or in this very comprehensive article from the Netherlands Heart Journal.
♥ Find out about WomenHeart: The National Coalition for Women With Heart Disease.