Before certain dental procedures those with heart problems used to be advised to take anti-biotics to prevent infective endocarditis, a potentially fatal infection.
Recently, the guidleines have changed.  It is important for you to be aware of this debate so you can make up your own mind as to whether you might want to continue to request anti-biotics.
Please see this link and this link for discussions on the subject.

Hi

This is a new site set up to help build a community of those with Ebsteins, and those who are involved in some other way with this condition.  Our long term aim is to raise awareness and fund important research, whilst also providing information and support.

I would like you to suggest ways to develop ebsteins.org – let me know what you would like to see on it, as I have set it up as a resource for all of you.

I would welcome all ideas and feedback.

Caroline

 

For those of us in the UK our hospitals have a particular challenge as they see relatively few cases of Ebstein’s compared with the US.  To make this worse, cases of Ebstein’s divided geographically over a number of hospitals rather than having one or two hospitals of excellence.  This means that because Ebstein’s is rare, surgeons may peform very few operations, so knowledge and expertise is slower to build than somewhere like the Mayo clinic.

In addition, techniques such as the innovative cone surgical intervention, as far as I know are not available in the UK as yet.  Funding is short because the condition affect so few people (relatively), and we have not yet had a UK study to actually clarify how many people have been diganosed with this condition.  One aim of this site is to increase the level of expertise in this condition, through fundraising activity and donations.

Please post your comments about Ebstein’s in the UK.  I for one would like to know that if my child needs it, then she will get the most up-to-date surgery that is available, and we need to find a way of bringing this to the UK.

Caroline