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Bicuspid Aortic Valve Disease |
All aortic aneurysm and dissection in the chest |
For families and medical professionals, by families and medical professionals |
Creating a climate of hope, an atmosphere of caring, and a source of information for
all who are touched by thoracic aortic disease and the medical professionals
who care for them. |
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Creating a climate of hope |
BICUSPID AORTIC FOUNDATION |
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BAVD and TAAD in Our World Bicuspid aortic valve disease and other forms of thoracic aortic disease touch many
people of all ages, in all walks of life. Following are press reports and videos
giving glimpses into their experience. |
I would like to make a few comments on the video content above. • Fred Hoiberg's bicuspid aortic valve was diagnosed when he was in college. However, as many have experienced including my own family, nothing was ever mentioned about the risk of developing an aortic aneurysm. In Fred's case, a life insurance physical fortunately detected the large aneurysm in his chest. • Fred Hoiberg and Doug Wray are examples of two individuals born with bicuspid aortic valves who developed aortic aneurysms in their chests. Although BAV is estimated to occur in up to 2% of the population, it's association with aortic aneurysm and dissection is still often overlooked This lack of recognition continues to put lives at risk. • The increased risk of brain aneurysm is not mentioned. The Bicuspid Aortic Foundation is aware of several families, including that of Board Secretary, Carrie Mettler, where both thoracic aortic aneurysm/dissection and brain aneurysms are present. In the press recently, the experience of Amy and Megan Moxie is a tragic example of tremendous loss and suffering associated with diseased blood vessels involving the aorta and the brain. All of the risk factors for aortic disease in the chest must emerge from the shadows and be counted. The risk of brain aneurysm in families with thoracic aortic disease, largely not acknowledged presently, must also be included in the picture. Anything less leaves someone vulnerable to severe injury or death. With today's imaging technology, there is no need to guess - the heart, the aorta, the brain - all can be seen. There is a great deal yet to be done to educate both the medical community and the public. I encourage everyone to pursue the answers so desperately needed, as together we seek help and hope for all. Sincerely, Arlys Velebir, Chairman, Bicuspid Aortic Foundation |