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Survivor Story of Sue Glassey

It was 2003 late afternoon, and I was cycling with a friend. I think we chatted more than cycled. The previous year I had been diagnosed with Marfan Syndrome, which had been a huge relief since I'd known that I looked different since I was very young. I had a spontaneous mutation had no other relatives with this rare disorder. This disorder explained my shocking loose ligaments, skeletal issues and overall lankyness (is that even a word?) I had no idea as a child that I had a heart condition. When I was diagnosed, I was in my early 30s and I had 3 children....2 of whom ended up inheriting Marfan as there is a 50% chance of inheriting it. Oddly enough, my GP hadn't heard of Marfan or aortic dissection.

In 2003, I had two echocardiograms and was told my aorta was stable. While cycling with my friend, which as far as activities, I thought to be fine but as it turns out, I was one of the few that had a dissection out of the blue despite being watched.

When I dissected, I felt a pop, just mild but enough that I thought I'd dismount. Having learned about Marfan I instinctively knew I had experienced a dissection. I couldn't breathe followed by a tearing feeling and pain that went through to my back.

I vaguely remember the firemen coming, who could only give me oxygen. We live in a small town near Christchurch New Zealand and all we had was the medics/firemen, but an ambulance from the city was on its way. The rest was a blank.

My husband tells me a junior doctor with a few clues sent me for a CT where it was discovered I had an aortic dissection Type A. I am told there was a scramble as a surgeon and cardiac theatre staff were summoned. Anyhow my husband was told to say goodbye since there was a slim chance I would survive. By 7pm, I was in theatre having a 12 hr operation. It wasn't until I was back in the ward that it all sunk in and I was aware of this constant ticking noise that seemed to vibrate up my neck and in my head! I had The Bental procedure which included having my aortic valve replaced, aortic root and a lifetime taking the anti-coagulant warfarin, very overwhelming but I was alive!

Support is paramount whether family, friends or company. I also found support in meeting some highly motivated people via the internet as well as finding the Marfan community overseas. There was nothing here in NZ for Marfan or aortic dissection survivors, so I began a Facebook group for both, whilst collecting up a group of Marfan friends which get together once a year.

17 years later I am doing fine. I stay in contact with positive people while adapting my life to the new normal. I sew for therapy and do the odd repair or hemming pants for friends. This means most days I have people come visit and I feel helpful. I'm alive and have seen my 3 children grow up.

Awareness is so important. I'm sure I survived for a reason not only to educate but to also provide support to others.

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