Bicuspid Aortic Foundation View From Here January and February 2009

Is it better today than it was when we first heard about the BAVD that my husband has?

A search online today will identify several centers who have established specialization in thoracic aortic disease. Many of them include the bicuspid aortic valve among the reasons for aneurysm and dissection in the chest. We did not have the internet to help us in 1990. I remember going to the local library to read about the background of my husband's surgeon. Even 8 years ago, there was so little information. It is encouraging to see an increased focus today.

Yes, it is better today in some ways, but in many others it is not.

The emails and phone calls to the Foundation tell us that there is still tremendous need. Considerable confusion and great suffering continue. BAVD and familial TAAD, especially in those with the most severe forms, continue to challenge us all.

We hear from mothers wondering about the life-expectancy of their sons and daughters. Yes, it does take severe forms in some children.

We hear from wives whose husbands pass out without explanation. Trips to the ER and extensive testing fail to provide answers.

We hear from women who earnestly seek psychological help when anxiety is offered as the reason for their suffering. Psychiatrists confirm what they already know - they are mentally healthy.

And sadly, many still report that their aorta is not being checked, even though they have a bicuspid aortic valve.

Rarely is someone screened for brain aneurysms, despite an increased incidence in BAVD and TAAD families.

It is my sincere hope that the information on the Foundation website will help someone avoid the potentially devastating aspects of BAVD and TAAD. Later this year, the Foundation plans to make available a series of videos from our 2008 Conference.

As we continue to seek answers, partnering with our physicians,
together we create a climate of hope.

Sincerely,

Arlys Velebir

Chair, Board of Directors
Bicuspid Aortic Foundation

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