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| The Tip of the Thoracic Aortic Disease Iceberg? Photo by Danting Zhu on Unsplash |
At BAF we have spent the month of September 2021 focusing on those who need life-long thoracic aortic care.
It is so encouraging to see the increased global awareness of thoracic aortic disease. It has come a long way in the 20 years since my personal experience with my husband began. In the closing hours of this month, I am caused to reflect with gratitude on that which is seen and known - that which is above the water, so to speak.
Below the Water Line
However, those unknown, unseen, "below the water line", are those with unmet TAD challenges, those not receiving life-long aortic care. Who are some of these people?
- the undiagnosed
- diagnosed with bicuspid aortic valve (BAV), aorta not evaluated and monitored
- replaced BAV, prosthetic valve monitored but not aorta
- TAV relative of someone with BAV, aorta not baselined or monitored
- prior elective aortic procedure, such as replacement of a portion of the ascending aorta, remaining aorta not monitored
- prior elective aortic surgery for coarctation, not receiving effective ongoing monitoring
What about those who survive aortic dissection?
Are those who survive an aortic dissection ever presumed to be "fixed"? Do they become "lost to follow up"? Those we have met at BAF are receiving careful monitoring, perhaps because of their physicians' appreciation for their very survival and the injury done to their aorta. If any of them are not receiving ongoing monitoring and additional intervention as needed, they are also at increased risk, below the water line.
The BAV/TAD Population - 6.7 Million People in the US Alone
The BAV population is large: estimated at up to 1 in 50 people (2 %). Checking the census bureau population clock, it displayed the number of people in the United States as 332,800,350 people. Two per cent, or 1 in 50, is 6,656,007 people born with BAV in the United States alone.
Whenever I am in a group of 50 people or more, I wonder about those around me, more frequently they are males, born with a two-leaflet aortic valve in their heart - possibly already replaced. I have met some of them over the years, sometimes in such unexpected settings.
Some statistics mention that 5% of those with BAV dissect. Five percent sounds small. In the financial world, it's only 5 cents out of a US dollar. When applied to a large number however, such as 6.7 million, that relatively small percentage yields a six-figure result: 335,000.
When applied to humanity, think of the tremendous number of BAV lives with a torn aorta in the United States alone. However, this is a global, not just a United States, problem.
The BAV/TAD View in 2021
Twenty years ago, it was very difficult to find information and help for an "ascending aortic aneurysm", but we did it. Knowing how challenging it was, we were moved to help others, many who also no doubt thought they were "fixed for life" by a BAV replacement.
There are still those today with a replaced BAV and presumably receiving good ongoing care, who have no idea their aorta is bulging, endangering them. I spoke to one of them quite recently, whose BAV was replaced 9 years ago. This person is above the TAD water line now, the bulging aorta exposed, receiving comprehensive aortic care.
I ponder once more how many with BAV/TAAD die undiagnosed, uncounted, a "natural" death without autopsy; perhaps an in-hospital death due to aortic dissection, but the aortic valve condition unspecified. How large is the iceberg beneath the water?
In 2021, we are in a better place in many ways, but not yet where we aspire to be in terms of BAV/TAD. We look forward to new advancements that will come through the efforts of gifted physicians, surgeons, and researchers around the world.
As those affected
are included
in the heart/aorta teams of today,
together we will advance,
lowering the water line,
more receiving life-long aortic care,
Creating a climate of hope,
~Arlys Velebir, Bicuspid Aortic Foundation
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