Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Hi all,  Had surgery for my thoracoabdominal aneurysm in March this year - massive operation in Southampton General and had a really tough time - was in ICU for 6 weeks - but, I am WELL on the way to a full recovery and enjoying life as much as I can. 

Have been seeing the genetics Doctors (as my mum also had x2 aneurysms 15 years ago) and we (my mum and I) have been told we have 'Loeyz Deitz Syndrome' (which is hereditary)  - which is believed to have caused our aneurysms.  As far as I can tell, not much is  known about this condition at the moment, but have looked at it on the internet (sometimes not a great idea I know!!), but we have none of the symptons (other that the connective tissue disorder - which caused the AA).  Didn't even know I had this disorder until I had blood tests 1 month ago. 

Anyone else have/heard of Loeyz Deits?

It would be great to hear from you if you have!!

 

Lara

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Lara

loeyz deits syndrome (LDS) is a disease or condition that weakens the connective tissue in the body. It is also hereditary. It is becoming well documented especially in the US and their is quite a bit of information on it. The best reference I can give you is to look at the Loeyz deits foundation website link. Please let us all know how you get on. In a way you have to thank your doctors as this is not easily diagnosed and they deserve full credit for thier work in diagnosing it. Also remember forewarned is foreamed! Stay well and keep getting better!

 

Cheers

 

Graeme

 

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