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Mary's Story

My name is Mary and I am writing this story when I am 34 years of age, and up to 2 years prior to this I had no idea I suffered from Marfan’s or that my life would change dramatically as a result.  I do not have the classic Marfan features; in fact, I am quite small at only 5ft 10inches.  Spookily enough, my life changed on the 11th September 2001 which is the date I will always remember because of the horrendous September 11th attack on the twin towers.

Prior to this I worked from home in Mallow, Cork and attended Dublin for meetings during the week.  It was on one of those days in Dublin that I collapsed at work with the most horrendous chest pain.  I was quickly brought to a local hospital where some blood tests were done followed by and ECG.  It was believed that the pain was just a bad attack of reflux.  I was sent home but thankfully, the following morning, a casualty doctor brought me back in to review my test results again and promptly admitted me.  The following day, I had the second attack, which this time lasted for nearly 6 hours.  The best way, I could describe the pain was a dragging tearing pain from my chest down to my stomach.  4 days later a CT scan was performed on me and it showed up my aortic aneurysm.  The pain from the previous 2 attacks had been the aorta dissecting!

I should add at this point that my mother at the tender age of 40 had collapsed at home suddenly one morning and died.  An autopsy revealed that she died of an aortic aneurysm, which had ruptured.   This had been mentioned to the local casualty doctors but Marfan’s was never mentioned.  After my aortic aneurysm was discovered, I was transferred immediately to James’s Hospital and emergency surgery was performed on part of my aorta, which was successful.  At that time, unbeknownst to me, my family and friends had been informed that I had come through the surgery well considering the very fragile state of my aorta.  An aortic root repair was performed on me.  I still have a dissecting descending aorta which is being monitored and controlled via medication.

Since then, my siblings were all examined and only my brother has shown signs of leaking mitral valve and dilating aorta.  My health has been relatively stable although I do find myself suffering from nagging pain in my back and along my rib cage.  I also suffer from ongoing eye problems and my migraines have increased dramatically.  Of course, being told that you have a serious genetic disorder does come as shock to the system.  Personally, it took me a long time to adjust to this and what I would say to take advantage of all the backup services on offer.  I have had to make changes to my life including downsizing my job.  However, I am alive and well and enjoying life and thank “my lucky stars” that I survived both attacks.

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Cincinnati, OH 45202
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