Sunday, December 7, 2014

Why Do We Need Heart Valve Research?

Heart valve research?  Why?
I thought that was solved a long time ago!

 Can it be true that with all the modern advancements,
people are still suffering, still dying?

Young, strong, otherwise healthy people?

Yes, sadly, it is true.

Won't you help us fund badly needed research?

The Big Three

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 
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?

Why Fund Valve Research? To Have Better Lives

How Many Surgeries?

Robby Benson - First Surgery at 29
Robby Benson had his first BAV surgery at the age of 29, and in the years since has had three more. Here is a blog post with more information and references to his book.

Derek Owens - First Surgery in High School

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. 

Some Cannot Have Surgery at All 

In addition, those with BAV who are not well enough to survive surgery still face a gradual decline resulting in death due to their diseased BAV. Here is the story of one courageous woman unable to have surgery: Lily's story.  

With Your Help, We Can Do Better

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.

Together, through funding research,
may we create a climate of hope.

Best wishes,
Arlys Velebir
President and Chairman
Bicuspid Aortic Foundation