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Posts (6)

Sep 16, 2011 · SCAD & Heart Disease in Heart & Blood Health

Hi! So, what is PFO? It’s amazing how many terms there are for things. It’s interesting to learn a lot of this medical stuff, but kind of difficult being the “oddity” isn’t it?! We look healthy and don’t fit the bill of typical heart attacks, TIAs or strokes, etc.

Happy Friday!
~ J

Sep 11, 2011 · SCAD & Heart Disease in Heart & Blood Health

FMD seems to be most commonly found in the renal (kidney) arteries and in the corotids. There are a few different types of FMD but the most common creates the appearance of a string of beads on angiography. The middle layer of the artery is abnormal and makes the artery wall bumpy and it creates webs within the artery. Blood then has a hard time getting through. It can lead to blockages, clots, anneuryms and dissections.

It’s not very common at all in the coronary arteries. I know of a few other people, and am actually in a study with a doctor in Canada who is researching FMD of the coronary arteries. My coronary arteries are not bead-like; they are skinny, really bendy and branch off in odd ways. But I have beading in several other arteries in my body — the corotids, renal, and several other places. It was diagnosed at Mayo by doing a CT of my body.

Because there’s so little out there known about FMD, I worked with a woman I met thru an online support group to start a Midwest women’s support group. You can check out our website if you like: http://www.mwva.org

I so wanted to help create support and information for FMD and/or SCAD because nothing was out there about either condition. I was so frustrated. So, it’s great to see both subjects getting more and more attention. And it’s due to the internet connections we’ve made! I “met” you and Laura on WomenHeart around the same time as met the other woman, Kari, with FMD.

I can email you some articles if you’re interested in more about FMD. I strongly encourage you to be tested. It can start with your general MD or cardio listening to the corotid arteries, and listening to the abdominal arteries. If the blood sounds swooshy, or sounds turbulent, there is cause to look further. Ultrasounds are a great test as well.

Sep 8, 2011 · SCAD & Heart Disease in Heart & Blood Health

I agree that we have coronary artery disease, so maybe when you get right down to it that means we have heart disease. I asked the question because it sometimes bothers me as I look for a “camp” to be part of. I do some volunteering with the Go Red for Women campaign of the American Heart Assoc, and I think I fit there. But I’ve had 3 dissections in my coronary arteries, and feel like that’s different than a more typical heart patient. I have a general disease of the arteries, called FMD, so am not just a heart patient either.

I assumed there was a black and white definition of what heart disease is, and I wonder if it applies to me. But, as is the case in general with SCAD and heart attacks in our 30’s, not much is black and white!!

Thanks for your thoughts Katherine.

Aug 29, 2011 · SCAD & Heart Disease in Heart & Blood Health

Hi all,

For those of you who’ve experienced SCAD, I have a question… and feel kind of dumb asking it. Are we considered to have heart disease?

Thank you!

Aug 22, 2011 · Spontaneous Coronary Artery Dissection (SCAD)? in Heart & Blood Health

I second this! Thank you to Dr. Hayes and Mayo for taking us on and searching to learn more about SCAD!

Aug 14, 2011 · Social Media Summit Scholarship Essay – Kari Ulrich in Brain & Nervous System

Way to go Kari! I work with Kari in the Midwest Women’s Vascular Advocates support group. I met her via social media nearly two years ago, shortly after my diagnosis of FMD. She was the first person I met with FMD and she’s changed my life! We probably can’t stress enough how scary it is to be diagnosed with something the doctor tells you is terribly rare, with no cure. It is a daunting, extremely fear-inducing experience.

It was social media that brought us together (a web chat via Inspire) and it is Kari’s experience with social media such as Twitter, Facebook, YouTube and the web that has brought us into contact with people from all over the world. Our mission is to support those with FMD and other non-inflamatory vascular diseases; Kari’s commitment to, passion for, and aptitude with social media is an extremely integral part.

Please consider her for this scholarship to further her depth of knowledge with social media. It is critical to the growth of MWVA and our ability to support people with this poorly understood and often dangerous disease. ~ Jennifer Moreen