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Perhaps the "Big Three" dangers for someone born with BAV are
bicuspid aortic valve stenosis, regurgitation, or both
aortic aneurysm which may lead to tearing (dissection) or rupture
endocarditis - infection of the heart
While some may avoid all of them, others may find themselves in a fight with one, two, or all three at various points in their life. It is well to remember that as we admire their athletic abilities and glowing, healthy appearance.
Why Fund Valve Research? To Save Lives
Sudden death is a risk for someone with a diseased aortic valve - whether that valve has stenosis (narrowing), regurgitation (leaking), or both.
Chuck Doherty, BAV Stenosis
Chuck Doherty, age 34, died suddenly at the end of a routine 8 mile run. His BAV had been diagnosed. Despite being under medical care, Chuck lost his life. Why? Were they waiting for symptoms that never happened? Did someone fail to appreciate the severity of Chuck's stenosis, especially in someone so young? Where is the information that would help a young man and his doctors make the right choices, so that Chuck would still be alive today? Questions without answers.
Chad Rogers, BAV Regurgitation
How could someone like Chad, diagnosed with BAV as a baby, suddenly lose his life at age 30? No, it was not an aneurysm that tore or ruptured. It was his bicuspid aortic valve itself that led to his sudden death.
His family has told us that Chad was very active in both cross country running and baseball in high school. The last few years, he ran marathons, completing about 12 full marathons and 3 half marathons. Over all those years, he had no restrictions on his physical activity. He had no obvious symptoms and appeared in good health until the day he died. Why? Why did this happen? How can it be prevented?
What does the future hold for those whose first surgeries are at young ages? How many surgeries will they ultimately face? Can we find better valve solutions for them? There are good choices today, but a replacement solution as good as their own valve should have been still eludes us. Can we find that "ideal" valve solution?
Other BAV Complications
My husband's BAV was replaced in his late 40's. It saved his life then. There was no recognition that he might be subject to complications because he was born with BAV. Fifteen years later, the valve that saved his life was the source of a terrible injury to him. No one understands why his body formed not only scar tissue but fine strands on that mechanical valve. Some of the strands broke off one day, showered his right brain with particles, and changed his life forever.
I hope haring these stories has helped explain why the Bicuspid Aortic Foundation has chosen to fund research of the bicuspid aortic valve itself.
Your donation in any amount can help us make a difference in BAV lives everywhere. You can donate on our special page, Take the BAV Challenge, or by mailing a check to the Bicuspid Aortic Foundation. Here is our mailing address:
Bicuspid Aortic Foundation
30100 Town Center Drive, Suite O-299
Laguna Niguel, CA 92677
We are an entirely volunteer organization, and 100% of all funds donated for valve research will go directly to that effort.