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Turning the tide for rare disease

Ms Colorado America 2022: two-time aneurysm survivor and a champion for cardiovascular disease prevention

Juliet Abdel’s first spontaneous vertebral artery dissection was in 2019 and her second in 2022, when she learned that she has fibromuscular dysplasia, a rare blood vessel disorder. Juliet explains how she is using her platform as Ms Colorado America 2022 to help prevent cardiovascular disease

Juliet Abdel

Who would have thought that at the young age of 29 I would be sitting in a hospital room dumbfounded over what I was diagnosed as having suffered? An aneurysm. To be more specific a spontaneous vertebral artery dissection (sVAD for short)—which apparently explained what I had endured for the two weeks leading up to the situation I found myself in.

But first off, I need to take a step back and introduce myself to you. I am Juliet Abdel, a C-suite business executive, published author, leader of self-care bootcamps, heart healthy speaker, radio show host and champion of cardiovascular disease prevention. I am dedicated to helping others heal and lead healthier lives and I have leveraged my title as Ms Colorado America 2022 to continue to work with the American Heart Association to do that. In my spare time I love on my three-and-a-half-pound chihuahua, Cupid (who looks a lot sweeter than he can be), and my mother who is a heart and stroke survivor.

Juliet’s first aneurysm

I can recall exactly the moment the symptoms of my sVAD started, back in 2019. It was a time of great elation for me as I had just received an industry award at the American Chamber of Commerce Executive annual event in California, which took place after my Board Service at the US Chamber of Commerce Institute, where I had educated hundreds of others. I never would have guessed how much my life would change in the weeks to come.

I flew home back from that wonderful time to a beautiful sunny day in Colorado. I was experiencing the most enormous migraine ever—unlike any I have felt before. However, most people that know me, know that even that would not prevent me from working and putting maximum effort into what I do. And I kept at it, albeit painfully, putting in hours at work and putting off one important person (myself) in the process.

After two weeks of taking over the counter painkillers, literally counting down the time I can take the next dose, the migraines did not subside, rather they intensified. And it seemed to progress to the right side of my neck, where I felt a sense of whiplash, so I was forced to go in to see a doctor. Three primary care appointments later, medication for migraines and shots all over the back of my neck and head all led to one thing… a stronger migraine.

I have described the feeling as like being mauled by a bear. I could not even open my eyes let alone communicate my pain. Walking without assistance was virtually impossible because of issues with balance.

After a trip to the ER and pushing my physicians to discover what was going on, I was told that I had suffered a spontaneous vertebral artery dissection (sVAD for short). They also advised me on what not to do: no yoga, no caffeine, no libations, no increasing my heart rate, but take medication, take things easy and be as focused on recovery as possible. Diligently, I did that and more, for six months and I recovered.

My biggest way to self-motivate an entire lifestyle change was pageantry as it forced me to focus on myself and being a better version of myself. Boosting my health and wellness and giving back to the community gave me my personal strength back. Throughout my reign I wake up each day with the energy to put a stop to cardiovascular disease.

Juliet’s second aneurysm leads to a new diagnosis

But my story did not end there. In fact, this past April I experienced an episode of severe nausea more than seven times in a 30-minute window. I was incoherent and had a severe migraine. Had I not called on a friend, who knows where I would be. I was rushed to the ER and there I was told I had fibromuscular dysplasia (FMD). What they didn’t share is what that meant.

So off I went to rheumatologists, haematologists, neurologists, primary care. A month later I discovered I had suffered a second aneurysm. This time on the left side of my neck. And that is why I am writing to you all today. This FMD is a rare disease, so rare in fact, it was undiagnosed the first time around, so rare that numerous tests including imaging, lab work and screenings had to be done for them to justify this diagnosis.

So, what does that mean? “Fibromuscular dysplasia, commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall.”1 It means that I have a disease of the arteries that may cause narrowing (stenosis), aneurysms (bulges) or dissection (tears). This was connected to my 2019 incident. Essentially, FMD is what caused my spontaneous artery dissection then and now.

But I am a fighter; I am resilient. So long as I have air in my lungs, I’ve promised to use that to leave
a legacy behind me and fulfil my life’s purpose: to help stop cardiovascular disease in its 
tracks.

The more education and awareness we have around rare diseases, the quicker we are to respond to them. Recognising symptoms is key, and even if they may mimic so many other things, you must take note. Know your body and track any clues it gives you.I believe any disease is best caught earlier on so you can develop a health plan and live a fulfilling life.

References

[1] rarediseases.org/rare-diseases/fibromuscular-dysplasia


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