Tuesday, September 20, 2005

Aortic aneurysm information

I’ve discovered that there’s not much information readily available on the internet regarding Familial Aortic Aneurysms and Thoracic Aortic Dissections (which is the genetic condition my dad and aunt died from and what I am at risk of).

So last night I made up a webpage of the research I’ve done on aneurysms and dissections which can be found at http://sarah.pollock.id.au/heart. It’ll be a work in progress so if anyone has any websites, newspaper articles, magazine reports or anything useful please email it to heartinfo@gmail.com and I’ll add it to the website.

The aim is to have a central page that people who are in a similar situation can find through Google and discover lots of useful information.

With a condition such as aortic aneurysm, which has a high mortality rate of people who actually have a dissection, information is the key. If you do not know you are at risk, it is unlikely you will get the scans you need to be able to detect it. A large amount of aneurysms are found by accident when other tests are being done. I would have never gone to the cardiologist if I hadn’t have gotten chest pains, despite my dad and aunt’s deaths. I thought I just had to get an ECG which as I discovered is completely different to an echocardiogram!

I’m sure when there’s two sudden deaths like in our family, most people would prefer not to talk about it as it is a painful thing to talk about. Unfortunately as it is a genetic condition, it HAS to be talked about and people need to be aware of the consequences. Even those young and fit are at as much a risk as those older and less fit.

1 comment:

Jen_runs said...

Awesome job Sarah - well done. Good on you for taking the initiative and doing something that will inevitably help other suffers.