“All the SCAD ladies, put your hands up!”

6 Sep

by Carolyn Thomas  @HeartSisters

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 look at 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.”

k

* NOTE:  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 DissectionFind 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.

.

j

17 Responses to ““All the SCAD ladies, put your hands up!””

  1. Heather June 24, 2014 at 11:45 am #

    Hi
    Wonder if anyone can advise me? I had an episode of temporary blindness in my left eye, lasted 7/8 minutes. This was 16 days ago, the paramedics came at the time, suspected TIA but they said I was fine and to get Dr and optician to check me over in the following days. I have always been fit and careful with my health. Hospital consultant has checked so far, my bloods and scan my carotid arteries, also physical exam, all looking good. I have had a 24hr HR monitor fitted but no result yet.

    I am on aspirin and due to see to see cardiologist, neurologist and optometrists all in the next week. I currently feel lightheaded and shaky at times without doing very much, with no real chest pain but a heavy feeling and occasionally down my arm but not continuous. Doctors suspect I have atrial fibrillation, I just came across your site and hoped you may be able to help.

    Like

    • Carolyn Thomas June 24, 2014 at 2:19 pm #

      Hello Heather – I almost missed your comment here, because you replied to this article about Spontaneous Coronary Artery Dissection, but I’ll try to address your main points. First, I’m sorry that you’re experiencing such distressing symptoms. It appears that you are being well-monitored, however, with appointments already in place for next week with three specialists. That is excellent news! I hope at least one of those will be able to steer you in the right direction. It’s hard not to feel anxious at a time like this when you don’t yet know what’s going on, but please do your best to remain calm, breathe deeply, and try not to obsess about the odd sensations you may feel (which may or may not have anything to do with your incident 16 days ago). If the diagnosis does turn out to be atrial fibrillation, your doctor will have a number of treatment recommendations for you. Best of luck to you next week.
      regards,
      C.

      Like

      • Heather June 25, 2014 at 1:02 am #

        Hi Carolyn,
        Thank you for your comments. I am if anything trying to under play what has happened. Although it is difficult to carry out my daily tasks and been off work ( which I very rarely have been in 30 years). From your reply, I’m not sure if you were saying, it may or may not be SCAD. I hope the specialists manage to work it out next week. Meantime I’m trying to take it easy.
        Hope you have a good day.
        Regards
        H

        Like

        • Carolyn Thomas June 25, 2014 at 5:09 am #

          Hi Heather – I’m not a physician, but I would not be suspecting SCAD based on your description of symptoms. Hope you can continue to take it easy for the next week until you see the three specialists.

          Like

          • Heather June 25, 2014 at 5:45 am #

            Thank you Carolyn

            Like

  2. Elaine Bedlion January 21, 2012 at 8:18 pm #

    I too, am excited about this study! I shared my SCAD experience on the Mayo Study Blog and I am looking forward to being a part of the SCAD study if they can use me. I was wanting some feedback regarding another angiogram. My Dr. wants to repeat it in Feb. (6 mo post SCAD). I am a bit nervous as I know even the procedure can cause a dissection. I would rather get a CAT scan or ? Would appreciate feed back.

    Like

    • SCAD research January 22, 2012 at 7:17 am #

      Hi Elaine. I’m so glad you’ve found support and are interested in the Mayo SCAD research! Have you had a chance to call the study coordinator at (507) 255-0473? She can get you started with the process.

      I completely understand your concerns about a repeat angiogram. Have you talked to another cardiologist for a second opinion? It may feel strange or disloyal, but truly, you have every right to hear another professional’s opinion on something this important. We must be our own advocates.

      Also wondering if your cardiologist has referred you for other testing to rule out connective tissue disorders, such as Marfans and Ehlers Danlos, or a vascular disease called fibromuscular dysplasia (FMD) — these are conditions that may be related to SCAD. The testing for these include blood or tissue samples, and CT scanning, which as you say, is another non-invasive way to view your arteries.

      Perhaps your cardiologist would consider these options and create a plan that you’re more comfortable with. If you aren’t having symptoms, it seems like a conservative approach would give you peace of mind and reduce stress!

      Like

    • Laura January 22, 2012 at 7:33 am #

      Hi Elaine,

      Welcome to the SCAD club! I joined in March of ’09… this is my experience.

      I had my first catheterization 24 hours after being hospitalized (90-minute door to balloon time? Fuggedaboutit!). Their “this will only take around half an hour” turned into four hours, as they discovered my dissection and put in six stents.

      That night, after the cath procedure, my blood pressure dropped through the floor, and the night staff freaked out. They did a cardiac echo, more EKGs, and even an abdominal CT–to make sure I wasn’t bleeding internally. Which, as is turns out, I wasn’t.

      Ultimately, they decided that I was just incredibly dehydrated, and that was the cause of my plummeting blood pressure, so they moved the IV from my arm to my neck in order to get fluids into me faster. And voila, my blood pressure came back up to an acceptable, if still low, level.

      The doctors were concerned about what had happened though, so two days after that first cath and stenting, they went in and did another cath, to look around and make sure everything was OK.

      I can tell you that in the hospital, when they first explained to my husband and me that I’d had a SCAD, they didn’t give us any other info, really. What I knew about SCAD would fit into a thimble–a really SMALL thimble, at that.

      So I’ve had one angiogram after my SCAD, and as far as I know, that second one–which really did only last half an hour this time–didn’t cause any further problems.

      But that’s just my own medical history; everyone is of course different.

      Knowing what I know now, though, if my cardio said that he wanted to do another angiogram on me, I would speak up and ask about other diagnostic imaging options. And if he were open to talking to a SCAD expert, I would offer to put him in touch with Dr. Hayes.

      Also, if you haven’t yet, you might want to check out the WomenHeart message board over on Inspire; there are a lot of us SCAD survivors there, and most of us are vey open about sharing our stories and experiences, and answering questions.

      best wishes,
      Laura

      Like

  3. Mary Dyk September 20, 2011 at 7:33 pm #

    Thank you Carolyn for this blog. I am a SCAD survivor. I signed up to be in the larger study. I am hoping they will find some answers, especially if it can happen again. I had 4 stents put in to repair my tear. I am doing fine, and it is great to hear about others who have been through this.

    Like

  4. SCAD Lady September 19, 2011 at 11:21 pm #

    This research at Mayo is very promising. I think they might discover that this is not so much a “rare” condition as it is “rare” that doctors accurately diagnosis it in time.

    Like

    • Carolyn Thomas September 20, 2011 at 8:05 pm #

      I agree – extremely promising! – and to think it was real live SCAD survivors who spurred Mayo Clinic researchers to run with it.
      Cheers,
      C.

      Like

  5. Wanda Yu September 7, 2011 at 3:22 am #

    My sister (age 37) had a heart attack caused by SCAD last month. I’m forwarding this to her so she can participate in this important study too. THANK YOU for telling us about this.

    Like

    • Carolyn Thomas September 7, 2011 at 8:30 pm #

      I hope your sister continues to recover from her SCAD event and is able to participate in this research, Wanda.

      Cheers,
      C.

      Like

  6. Laura September 6, 2011 at 5:19 pm #

    Carolyn,

    Thanks so much for covering this.

    I can’t tell you how excited I am about this Mayo-led research on spontaneous dissections. It’s my hope that maybe someday we’ll find answers to why they happen, who’s at risk, and what might be done to reduce that risk.

    Like

    • Carolyn Thomas September 6, 2011 at 8:25 pm #

      You’re welcome, Laura. I was just revisiting the WomenHeart online forum topic you started with this same title (“All the Scad Ladies, Put Your Hands Up…”) and found Peg’s response, with apologies to Beyoncé….

      “If you had it then you shoulda put a stent in it,
      If you had it then you shoulda put a stent in it,
      Woah oh oh, oh oh oh, oh oh oh, whoa oh oh….”

      Like

  7. Vetia September 6, 2011 at 4:49 pm #

    Hi,
    I am new to this site and I’m not good at sharing. I would like to thank you for enlightening me as to just what SCAD is.

    But I am aware of Doctors referring to ones condition as being a fluke. It makes you angry but sometimes there is no explanation for why things happen. I am still trying to find out why I had a massive heart attack and I never felt any pain.

    Like

    • Carolyn Thomas September 6, 2011 at 7:44 pm #

      Thanks for taking the time to comment, Vetia. You’re so right – sometimes it seems that there simply is no explanation for why things happen, no matter how much we may demand answers. And we know that up to 40% of women have no chest symptoms at all during a heart attack. NONE! You might be interested in reading more on this at “How Does It Feel To Have a Heart Attack? Women Survivors Tell Their Stories”.

      Like

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