You may have noticed that The Ebsteins Society website was offline for a while, due to some unexpected technical difficulties with database sizes.  Software updates as part of this work caused some incompatibility issues which slowed the site restoration, for which we apologise.   Functionality that has been removed or reduced while we continue to improve the site includes:

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I am 67 years old and was diagnosed with Ebsteins Anomaly (EA) in March 2014.

In late 2013 I was having problems with fuzzy vision and MRI indicated abnormal blood vessels in my eyes. I was referred for cardiovascular investigation and in early 2014 atrial fibrillation was found and EA diagnosed by echocardiogram. The EA diagnosis was a complete surprise. The doctor said there was something unusual in my echocardiogram and went to consult a colleague. He came back and said I had EA and was only the second adult case he had seen in his long career. I was told to avoid vigorous exercise – his words were: don’t run for a bus! I’m a retired biomedical scientist and looked on the internet for information about EA and was quite alarmed at the seriousness of the condition and the apparent low incidence of survival to my age.

In subsequent weeks I had instances of palpitations and shortness of breath in the night resulting in emergency visits to A&E and became very aware of right jugular pulse due to tricuspid valve regurgitation. Simply going upstairs to bed causes shortness of breath with a strong jugular pulse making it difficult to go to sleep because of hearing blood flow in my head.
Over my whole life I have avoided vigorous sporting activities (did not have the energy!) and had several instances of transient blackouts in recent years. However, as a scientist I have travelled widely round the world without health issues. The recent emergence of EA symptoms may be stress related. My father died in 2013 and I have no siblings to help me support my 90 year old mother who has memory loss and lives at the other end of England.

I have been told that although tricuspid valve repair is possible, for me the risk outweighs the benefit at this time. Taking daily beta blocker, histamine H2 antagonist and warfarin tablets I am now feeling much better but have to carefully manage my daily amount of exercise. Since starting warfarin in January 2015 the jugular pulse seems less intrusive.

I would be very interested to hear about the experiences of anyone who has been diagnosed with Ebsteins Anomaly late in life!