A chance movement can make a lifelong difference. By unconsciously placing his hand on the GP's consulting table during an appointment for a bad back, Rich drew attention to his long, slender fingers. This, in turn, sparked the suspicion he had Marfan syndrome.
I was always thin as a child and teenager, I had a big growth spurt when about 15 so that I was now tall and thin.
Fast forward a few years until I was about 25 (approx. 1985). I went to the local GP as I had a bad back. I happened to have my hand on the desk and the GP noticed my long fingers. “Can I look in your mouth?” she said. It turned out that I also have a high palate of course I am also very flexible. The doctor asked if I would go for some tests. I was happy to do this and before I knew it I was off to Southampton having echocardiograms and later an angiogram. In the hospital I was asked if it was ok for some students to observe. By now they were talking about me having Marfan Syndrome which was extremely rare. Later the results all came back and it was confirmed that I did have the syndrome. Also that I had a dilated aorta. We’d need to keep an eye on it.
Over the next few years I had some more tests and I understood that although my aorta was dilated it wasn’t dilating. I rather assumed that everything was ok. I was very fit and healthy otherwise.
Later, I got married again and because we saw something about someone who had collapsed and died the Marfan situation came into conversation. Thankfully my new wife suggested strongly that I should go and get everything checked out. What a blessing for me!
By now I was in my early 50s and had more angiograms, echocardiographs and CT scans. The results showed that I had a dangerously dilated aorta. I would need open heart surgery to have an aortic root replacement. The alternative wasn’t really an alternative – I wouldn’t make it to 60. I had the operation in 2011 aged 53.
Southampton hospital was superb, my care was fantastic and I’ll be forever grateful. Incidentally they have a place called Heart Beat House where relatives can stay. It was a great help for my wife.
The operation was a complete success and I have enjoyed rude health since. I am far more aware of the situation and also it turns out that I am in fact one of many. I’m active and celebrate my 66th birthday this month.
I worry that like me there must be plenty of people going about their daily lives with no idea that they might have Marfan’s. After all they might feel great. When I meet someone who physically displays some of the signs (tall, thin, flexible etc) I try to let them know that it is worth double checking. Invariably they haver never heard of the syndrome.
Awareness is key.
