Dissected thoracic aortic aneurysm.

[Bananacar]

Only just jointed in the hope I can gain a bit of information about my condition and how to manage it from anyone who has the same problem. Info seems to be few and far between from the health professionals.

[JulianM]

With apologies for a bit of copy and paste on my part ...

There are two specialist charities in the UK focussed on aortic dissection, which both have a range of helpful resources on their websites.

My top recommendation is the patient guide which most of the specialist centres are now giving out to everyone diagnosed with an aortic dissection: you can download the PDF here: aorticdissectionawareness.o...

The main website for the survivor-led charity which publishes this, Aortic Dissection Awareness UK and Ireland, is here: aorticdissectionawareness.org/

Please also take a look at the very helpful resources on the website of the Aortic Dissection Charitable Trust, which are here: aorticdissectioncharitablet...

All the very best!

[edited to repair links: thanks, Cliff!]

[Bananacar in reply to JulianM]

Thanks for your advice, I'll check the websites.

[Cliff_G]

Hi Banacar,

Sorry to hear that you've joined the club that no-one wants to be a member of. I dissected in late 2017. I hope you're managing ok so far.

I worked with the Aortic Dissection Awareness charity to produce the Patient Guide to which Julian refers. However, I couldn't get his link to work. It's here:

aorticdissectionawareness.o...

I was editor and like to keep an eye on my baby. I take it you weren't given a copy by your hospital. If not, perhaps you would private message me to let me know which hospital and I'll have the team get them some copies.

Let us know how you get on. The patient community for AD in the UK is the charity's Facebook page facebook.com/groups/aorticd... . You'll be able to talk to many others who have been through exactly what you have.

[Bananacar in reply to Cliff_G]

My hospital is John Radcliffe in Oxford. I was not given any advice or literature with regard to management of my condition so I will check the website you recommend. Thank you.

[Cliff_G in reply to Bananacar]

Thanks. The Guide was only launched in May '22 and I can see JR only got it a little after that, so that explains why you didn't get one 18 months ago.