I'm writing with great hope for all of us spontaneous coronary artery dissection (SCAD) survivors. At this moment, there are at least 84 documented SCAD experiences on this message board. Fifty-nine of us (70%) are "cause unknown" and 25 of us (30%) are "pregnancy related."
For several years now, I've been following our posts and trying to work out a research opportunity for the data. While at the Mayo Symposium last week, I spoke with Dr. Sharonne Hayes, founder and director of the Mayo Clinic Women's Heart Center. I told her about our very vibrant group on the message board, and described our commonalities, differences, and overall frustration at being diagnosed SCAD with no help in sight.
She asked for a written proposal, so once I get feedback, we'll know if it's possible to seek corporate funding for a bona fide research study!!!!!!
I think Laura would agree this is as exciting as seeing a dissection on the "big screen" of the Marriott ballroom (kidding!) -- although we were both newly motivated when she found that neither "dissection" nor "SCAD" appeared in the glossary of terms.
Please stay tuned and I'll update you as soon as I get feedback to share!
Katherine
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SCAD -- new research opportunity
- By KAKLeon
- Posted October 20, 2009 at 2:48 pm · 23 replies
- In My heart disease - diagnosis and symptoms
- Shared with the public
- Edited November 12, 2009 at 8:14 am
23 replies
- Oldest first
- Newest first
- By NZGirl
- Posted October 21, 2009 at 4:49 am
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Hi Katherine,
This sounds really exciting! 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. There are far too many of us for it to be ignored any longer, and incorrectly labelled as a condition which is just too 'rare' for in-depth research.
I will stay tuned to your posts!
Take Care,
Sharon
- By laurahc
- Posted October 21, 2009 at 8:03 am
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Hi Katherine,
Thanks so much for all you've done on this so far--I'm happy to help out however I can, besides standing up and being counted as one of the "cause unknown" SCADs. And you know, it actually WAS kinda exciting to see a dissection on one of the cardiologist's slides last week. :)
Thanks for the reminder about the glossary too--I need to send them feedback on that. Lots of other rare conditions listed, but not SCAD. Makes a girl say hmmmm.....
-Laura
- By KAKLeon
- Posted October 21, 2009 at 8:32 am
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Thanks Laura (and "hi" to Sharon and Mto2M!).
I'll definitely need your cyber expertise and help! Odia and I split it up last go around to make it more manageable. I hope she's OK. I've tried every email address I have, but no response. Hopefully she's just very busy with her boys!
Katherine
- By CJM3
- Posted October 21, 2009 at 10:39 am
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Hi Katherine- Please let me know if you need help with compiling all the info. I had a SCAD at 38 (march 2006) and my youngest was a year and a half old. Had my period when it happend and subsequently had spasms with every cycle for over a year before my hormones were stabilized. I was in the May class of 07 and know Dr. Hayes through subsequent work withe WomenHeart. I believe that there are many classifications of SCAD that should be looked at. ie. tear in lining (but not all the way through) of artery versus complete hole in arteries- where blood just pours out into chest cavity. Also- if not post partum- did you have period etc. when it happend. Maybe a questionaire should be written and results compiled for Dr. Hayes...just some thoughts. Let me know what you think! I am here to help if you need it.
Sharon MArkey
- By KAKLeon
- Posted October 21, 2009 at 9:03 pm
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Hi Sharon,
Just want to reassure you – and others reading – that I know your stories. I’ve read your posts many times while compiling the data (this is the same material I’ve given to Odia to work with her cardiologist). It will give Dr. Hayes a good picture of who we are.
The most important thing will be getting everyone to participate when the time comes. It would be helpful to update your profile and encourage others to do the same. Odia and I had a hard time getting people to respond.
So rest assured, this will be a truly scientific research study based on our individual imaging studies and medical records. So for now, I’ll get the preliminary data to Dr. Hayes and she will guide us in next steps.
Thanks for responding. This is exciting stuff!
Katherine
- By Madelainemae
- Posted October 23, 2009 at 8:30 am
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Hi Katherine
Well done you. I too will stay tuned into your posts. I would very much like to see some research as I have always long believed that there were more people out there with SCAD than we are lead to believe.
Michelle
- By KAKLeon
- Posted October 23, 2009 at 6:38 pm
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Thanks Michelle. You are so right. Did you get "it's rare, be glad you're alive" from your doctor?
Last year, my guy scoffed when I told him I knew of other women with SCAD. He's not my doctor any more!
K
- By Kim84
- Posted October 23, 2009 at 8:48 pm
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That's exciting news. Let me know what I can do to participate. I've posted before about my SCAD so I won't reiterate. I did have my SCAD right near the end of my period and had chest pain monthly for several months after the event (the doctors blew it off with the exception of my GYN). The geneticist I now see says there is a definitely a connection but she hasn't worked it out. Hormones flucuate so much they are tough to pin down. I'm 47 now and she thinks the hormone flucuations may cause problems as I approach menopause but so far so good.
Kim
- By Tori2T
- Posted October 24, 2009 at 2:55 pm
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I applaud your efforts and would also love to participate.
Tori
- By KAKLeon
- Posted October 24, 2009 at 3:27 pm
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Hi Kim. I'm nervous about menopause too. There are several women reporting a hormonal connection with SCAD/angina, so that's something I stressed in person and in the write up to Dr. Hayes. Also included the connective tissue disorder link, since several of us have consulted geneticists.
Hopefully we'll hear something this week!
Katherine
- By KAKLeon
- Posted October 24, 2009 at 3:47 pm
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Thanks Tori. I hope your recovering is going well and your angina is subsiding. That was bizarre about the artery in your thigh too. We'll get some answers yet!!
Take care.
Katherine
- By MVN
- Posted October 28, 2009 at 10:58 am
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Hi Katherine,
Thanks for approaching Dr. Hayes. It's exciting to think we SCAD sisters (and some brothers) may finally be getting some research attention!
I had my SCAD last year at age 47 -- no known risk factors, but I too suspect hormone fluctuations may have played a role (for me, peri-menopause). I'm a PhD RN and have searched the medical literature for published SCAD research. Unfortunately, there are only a handful of articles. Based on the literature and the postings of our SCAD sisters, I have some research ideas that you may want to consider for your proposal to Dr. Hayes: 1) the emotional toll of fearing a SCAD recurrence (it may be similar to PTSD or women fearing cancer recurrence), 2) awareness among emergency room clinicians that an estimated one in ten women under age 50 presenting with acute coronary syndrome is a result of SCAD, 3) the potential role of hormones in SCAD among women who are in the "no known cause" category, 4) frequency and assumed cause of post-SCAD symptoms (e.g., chest pain) during the first months and years, and clinicians' responses to them. I have a few other ideas as well, but this is at least a start.
I'd love to help in any way -- please let me know what I can do for you!
Margie
- By bonb
- Posted October 28, 2009 at 1:57 pm
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Hi Katherine,
Thank you for your work on this so far. It's amazing that there are 84 of us on here and how many who aren't on this board. It would be interesting to see what the time frame is that we have all appeared - i.e. have 84 SCAD survivors joined this board in the past 2 or 5 or 8 yrs. That would show really how much more common this is than what they are saying. My date was July/08 at 55 yrs old, post menopausal.
I look forward to your next update.
Thank you,
Bonnie
- By KAKLeon
- Posted October 28, 2009 at 9:44 pm
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Thanks Margie and Bonnie ... I'm just about to post on Dr. Hayes response to the proposal. And I noticed on Laura's post, that we have a new SCAD sister as of today. Exciting stuff!
We're definitely lucky to have Dr. Hayes taking this on for us. I'm keeping her updated, and as you'll see in the next post, this will be a lengthy process.
As to your question Bonnie, I started compiling posts from the old message board in 2005. SCAD posts showed up in dribs and drabs until about two years ago, when the pace picked up dramatically. May be because of the increased presence of WomenHeart and the fact that Inspire took over the online community ...
More later!
Katherine
- By IngridK
- Posted October 28, 2009 at 10:46 pm
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I'm brand new to this board. I don't have SCAD (had to look it up), but I see that you're saying there is a correlation between angina and hormones. I'm 45, recently diagnosed CAD, been seeking help for it since I was 35, and had chest pain since my 20's. My chest pain and everything that goes with it is absolutely cyclical. I can't get help from docs, and have found no info online about it. Where can I find out more about this connection?
- By KAKLeon
- Posted October 29, 2009 at 12:54 pm
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Hi, welcome! A lot of us are in the same situation you are. We believe there is a link, but don't have the science to back it up or doctors who want to investigate. We're trying to get a research project underway that will include studying the role that hormones play.
I'm sorry I don't have a more concrete answer. Try typing estrogen or hormones in the "find it" box, and you'll find other posts on the topic.
Katherine
- By KAKLeon
- Posted October 29, 2009 at 1:06 pm
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Hi all. I've been exchanging e-mails with Dr. Hayes, and here's an update of the latest:
- In addition to reviewing the summary of our SCAD experiences, Dr. Hayes has done a literature review and is evaluating options for a research initiative.
- She plans to develop an educational component (such as a review article) to add our information into the existing literature on SCAD.
- Any research protocol would go before an internal review board at Mayo for approval.
- As things progress, each of us will likely need to send our medical records/imaging studies to substantiate our SCAD diagnosis (not for second opinions or clinical suggestions).
So in a nutshell, we are in great hands and this will be a lengthy, but worthwhile process. I appreciate everyone's interest and patience. For me, personally, this has been six years in the making. However long it takes, I'm ready to ride it out. I hope you are too!
Dr. Hayes said to stay tuned ... I'll keep you posted.
Katherine
- By spared
- Posted October 29, 2009 at 3:43 pm
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I am so thrilled to hear that someone is actually trying to figure this out. I will be glad to help out in anyway. A doctor who gave us a second opinion is using my cath images to teach other doctors when to make a SCAD dagnosis. Just let me know how I can help.
Thanks, Karen
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