I was honored to spend a few hours recently with a very special family, while
all of them were being checked for bicuspid aortic valve disease. I was with
them during the consultation, as they listened to the results of the imaging
tests and described what they knew about BAVD and TAAD in their relatives.
Later, surrounded by this family at dinner that evening, I marvelled
at their strength. It is a strength born from great sorrow and loss.
There was someone missing, someone who should have been there with us. He
died suddenly, never knowing about the bicuspid aortic valve and aneurysm in
his chest.
Because of what happened to him, they were seaching for
understanding of what they must do, knowledge to keep them safe from BAVD/TAAD.
Sitting there with them, again I was thankful for the imaging that reveals the
secrets inside the brain and chest. Medicine does not have all the answers today,
but it is possible to look for signs of abnormality.
When their
Mother spoke to me about this experience, she said that now each of them has
a baseline. They know where they stand currently and have a reference point for
the future. And they requested their reports and copies of their images for their
own files.
This is an important aspect of the Foundation's work,
equipping individuals and families with the knowledge to undergo baseline testing
and maintain their personal medical records. You may find it helpful to visit
a new page, Medical Records and You, that has video clips from the 2007 Conference on this topic.
This family
suddenly lost someone young and strong. It is unthinkable that it should
ever happen to them again. They are taking every step possible to prevent it. I
hope that you and your family will too.
Proactively imaging ourselves and our family members
reveals the present
and creates a baseline for the future.
It is an important step in
creating a climate of hope.
Sincerely,
Arlys Velebir
Chair, Board of Directors
Bicuspid Aortic Foundation
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