Questions in Search of Answers in 2018

Questions Without Answers

Why do some BAVers tear/rupture their aorta?

Why do some BAVers have aneurysms that do not tear or rupture?

Why are there BAV/aneurysm and  TAV/aneurysm in the same family?

Why do some BAVs calcify and narrow?

Why do some BAVs leak?

Why do some BAVs do both: calcify/narrow and leak?

Why do BAVers get infection (endocarditis) in their hearts? 
Why do some BAVers develop blood pressure issues?

Why are many BAVers so athletic and energetic?
Why do many BAVers (and their TAVer family members) have "delicate tissue", joints prone to injury, "bad eyes", and other issues through out their bodies?
Why can't my doctor tell me ......?

Why............?

Why............?

Why............?

There are so many unanswered questions when it comes to the individualized care that each person with BAV and their blood relatives should have.

As this year comes to a close, we invite you to support our search for answers. Many of those answers may be found in the mice families being studied at the University of Ottawa. With your help, the Bicuspid Aortic Foundation wishes to continue to support this vital work. Online donations through Razoo may be made here. 


Thank you for joining us in our search for answers.

Best wishes in 2018,

~ Arlys Velebir

                       Bicuspid Aortic Foundation 

September Awareness 2016 - An Interview with Aorta and Heart

An Interview with Aorta and Heart

The aorta is the large artery seen rising up from the heart,
 with arteries branching upward to the head, then curving down

Two vital members of our body, Aorta and Heart, have agreed to be interviewed for Thoracic Aortic Disease Awareness Month 2016, hoping to set the record straight. They have so much to say, but for now agree to each limit this interview to their top three concerns. Aorta, being less famous, humbly lets Heart start first.

 Heart's Top Three

1. I am being confused with aortic disease in the chest.  
2. Aorta, you are so important! If you start bleeding around me, I may stop beating.
3. If it's not the Heart, check the Aorta!

Let me tell you and everyone, Aorta, being famous is not such a great thing. Have you done a search online lately, Aorta? The headlines scream about "Heart Problems", when you, Aorta, are the one with the problems. In these articles, aneurysm and dissection are mentioned - this is about you, Aorta, not me. How confusing is that! I know we are both in the chest, but in the year 2016 we should know better. There are enough problems that do belong to me, the Heart, without confusing me with aortic disease in the chest too. This is not just bad for my reputation, it is dangerous for the whole Body. We need to be very clear - is it a Heart attack, or is it the Aorta? Sometimes, in death, only an autopsy can tell for sure. I, the Heart, do not want to be blamed for deaths caused by Aorta!

Healthy Aorta

Aorta's Top Three

1. Nobody knows who I am. 
2. If they do know who I am, they seem to either not respect me or be terrified of me. 
3. Please, fix me before I break. 

People don't draw pictures of me, and I don't have a month with valentines, chocolates, and flowers dedicated to me. I guess no one ever thought that love was in their Aorta! Once you get to know me though, I am pretty amazing in my own right. There is just a lot of misunderstanding about me. Those who know me best do respect me and want to help me.

I have no desire to tear inside, or worse yet, fully break open. I'll admit, I'm not easy to work on, but it's going to be a lot worse for everyone involved if I start to bleed.  I'm so sorry that no one knows just when I may finally reach my breaking point. There are some clues, but knowing when to fix me is still a big challenge today. Maybe if I become a little more famous, more research will finally be funded. 

Thank you for giving me a special month of my own. I don't need the chocolates and flowers, just some attention! Please let me be clear, Heart does have a lot of problems. Just don't forget about me, your Aorta.  I hope September Awareness 2016 will help everyone learn more about me!

End of the Interview

The interview ended with Heart and Aorta acknowledging how close they are, special friends in the chest one might say. In health, they work together beautifully. They each just want their separate identities and problems to be understood, respected, and treated. They both deserve help and attention when they are diseased. After all, no one wants to be known as a killer. 

Before they left, Heart and Aorta enthusiastically repeated together, along with the interviewer, 

If it's not the Heart, check the Aorta! 

Learning Together

We are

Creating a Climate

of Hope!

                                           - Bicuspid Aortic Foundation