In honor of Marfan Syndrome awareness month, here’s today’s Marfact (provided by the wonderful Marfan Foundation).
Marfact #5: The life‐threatening part of Marfan syndrome is it’s effect on the aorta, the large blood vessel that takes blood away from the heart. In affected people, it can enlarge, leading to a tear or rupture. With monitoring and treatment, this does not have to happen!
Visit www.marfan.org for more information.
I was 17 years old when my cardiologist at BC Children’s Hospital sat my mom and I down and told us that my aorta was starting to enlarge. It was a hard thing to hear. This wasn’t my first echocardiogram; I’d been having them once a year, every year – as recommended – since I was diagnosed, in order to monitor the size of my aorta. Every year everything looked normal, and so that’s what we came to expect. I was never worried in the minutes between having completed the echo and getting the results, not even in the slightest.
Even though that’s a major feature of Marfan Syndrome – enlarged aorta – I always just had this feeling that it wasn’t going to happen to me. And that feeling grew after every normal echo, enough that I kind of felt invincible in regards to my heart and aorta. I felt even safer about it due to the fact that I was more of an atypical case of Marfan Syndrome to begin with. It was a nice feeling too, when so much of the rest of my body was continually breaking down or falling apart *I’m talking to you, eyes!*.
Needless to say that this sit-down conversation with my cardiologist was sufficient in bursting my bubble of aortic invincibility. The news wasn’t devastating so much, considering that overall my heart was still doing really well, but it was another manifestation of my disorder and it’s growing impact on my body and that’s never easy to swallow.
Three years later and though I’ve now been diagnosed with mitral valve prolapse, my aorta is doing really well. It hasn’t grown anymore since that initial change and the current measurements show that it’s still only slightly enlarged. Considering what some people with Marfan Syndrome have been through with their cardiovascular systems I count myself very lucky in that regard.
I don’t think of my annual echos as quite such a non-issue anymore, and every so often I give a worried thought to how things are going to look at my next cardiologist appointment, but mostly I try my best to just take things as they come and not dread or dwell on the “what ifs” of it. Marfan Syndrome can be a pretty terrifying thing if you’re looking at it through the potential worst case scenarios, but then again, life’s like that too. :)