Thoracic Aortic Disease Awareness September 2023 - A Time to Remember

"Try to remember when life was so tender

That no one wept except the willow"

"Deep in December our hearts should remember

And follow, follow, follow" 

How long is 22 years?

I do remember a time of innocence in terms of aortic disease in the chest. It is 22 years now since a large aortic aneurysm was discovered around and above the mechanical aortic valve in my husband's heart. It changed our world. It became clear after his successful surgery that others needed to be warned, to receive help. How long has time been since then? Very long. And very short. Time is like that, its length defined by what happens in the moments of our lives.

Remembering our roots at the Bicuspid Aortic Foundation, this year we mark the passage of time since becoming conscious of the tremendous implications of this disease and the need for awareness and advocacy. Those issues and needs, along with unanswered questions, persist today despite progress made.

At the Bicuspid Aortic Foundation it is a privilege to once again focus on the aorta with September Awareness 2023. It is indeed gratifying to see many global efforts to raise awareness, support individuals and families, and continue progress through research and advancements in surgery.

This September we remember...

• We remember those who died.
• We remember those who survive with injuries.
• We remember all those with thoracic aortic disease, too often undiagnosed.
• We remember the great pioneering medical knowledge and surgical progress that saves lives through out the world today.

At the Bicuspid Aortic Foundation we are
Remembering this September;
And along with our memories,
Creating a Climate of Hope,
~Arlys Velebir
                                          President, Bicuspid Aortic Foundation

September Awareness 2021 - Why "TAD" Awareness

2001  and "TAA" (Thoracic Aortic Aneurysm)

My personal involvement with aortic aneurysm in the chest began 20 years ago, in 2001. There was so little public information then. My late husband's physicians, although carefully monitoring his anticoagulation levels, had not  followed his aorta in the years following his BAV replacement. Believing a mechanical valve equaled "fixed for life", we were comfortable with only a very few echocardiograms in the following years. We were spared an aortic catastrophe when one of those echocardiograms, to check on the 11-year-old mechanical aortic valve, "discovered" the bulging aneurysm above it. 

2005 and Thoracic Aortic Aneurysm and Dissection (TAAD) Awareness

We read medical references in our search for information and help in 2001, where we found an unfamiliar term, "aortic dissection".  By 2005, when the Bicuspid Aortic Foundation first observed awareness for the aorta in the chest, we had learned about aortic dissection, the "D" in TAAD.

We learned the medical definitions, yes, but much more, we learned the meaning in human terms, for individuals and families. We do not forget those we met in those beginning days.

It is the human experience that ultimately defines these medical words:

 those who die, 
those who survive with injury,
 those who have elective surgery with desired outcomes.

2021 and Thoracic Aortic Disease (TAD) Awareness

With the passing of the years, at BAF we met others with additional aortic complexities such as coarctation. Again, we had learned the terms first, but their meaning comes from meeting those who have them - from children to adults. Consequently, we have adopted an umbrella term - "Thoracic Aortic Disease" to include them as well. 

One Man's Life-Long Aortic Journey Until Now 

Father Prodromos Nikolau's life experience with TAD began at age 2 in 1981, and thus far has included the following:

• coarctation repair (1981)
• BAV replacement (2000)
• "Thinking Everything is Fixed" (after BAV replacement, annual cardiology visits)
• discovery of Aortic Root Aneurysm (2007)
• root and ascending aortic aneurysm repair and replacement of prosthetic aortic valve due to strands (2013)
• "redo"of original coarctation repair (2015)
• ongoing checkups, life-long aortic care

 At the following two links are the details, in Father Prodromos' own words:

Journey Beginning  from Age 2 

Hidden Danger of Patched Coarctation

"So, life is precious"

 as Father Prodromos wrote,

and life can be extended 

for those with TAD

when they receive

 Life-Long Aortic Care.

~Arlys Velebir, Bicuspid Aortic Foundation