Our Voice

“How Arteriovenous Malformation (AVM) Impacted My Life”

Teen Mindset Magazine had the honor of interviewing Erica Carnegie, the 2019 Miss Teen Nation Nationals, a National American Teen & Collegiate Ambassador, and the first National Youth Ambassador for the Aneurysm and the AVM Foundation. In the interview below, Erica opens up about the struggles of having Arteriovenous Malformation (AVM), a rare deadly genetic disorder, but how this adversity fueled her to further pursue her dreams and inspire others with AVM.

What is AVM? 

“An AVM is an Arteriovenous Malformation which is a rare genetic disorder that affects less than 1% of the population. It is a tangle of veins and arteries that have constant blood flow that leads to the weakening of both the veins and arteries. This often leads to hemorrhaging, strokes, or aneurysms. As a result, there is 10%-15% chance of death, which is why this should be taken so seriously.”

What challenges did you have to face while you had AVM? How did those challenges impact your dreams? 

“I faced many challenges while having my AVM prior to my surgery and after. Before January 2018, my surgery, I faced lots of physical and mental challenges that almost made me want to give up on all of my wildest dreams. Prior to my surgery, I had to deal with constant migraines, temporary loss of vision, burning sensations on my face, shortness of breath, and more. The physical aspect did take a toll on me, but what was affected the most was my confidence. I would often feel less than or worry about what other people would think of my diagnosis, when in reality my true friends and family didn’t notice it. This made me less confident to speak in public and even had an effect on my pageantry.” 

What inspired you to persevere and achieve your dreams despite your diagnosis with AVM?

“My mom inspired me to persevere and achieve my dreams despite my diagnosis with AVM because she has always told me, “You are only as good as you think you are.” Knowing that I could be a role model for those around me while also accomplishing my goals is what kept me motivated throughout this journey. I am so grateful that I can look back on my accomplishments and be proud of the person that I have become today.” 

How are you helping and inspiring others who have AVM or have survived AVM?

“After having a surgery on my AVM in January 2018, I began looking for organizations to work with to find other survivors and be able to tell my story. A few months later, I began working with The Aneurysm and AVM Foundation to later become their first National Youth Ambassador. This is important to me because I was able to help in forming their youth ambassador program where teens and pre-teens can talk about their story and recovery process and get the word out about this rare disorder. I help inspire others by giving them a safe space to talk about their diagnosis and recovery while also speaking at events to further educate others on Arteriovenous Malformations.”

How has being an AVM survivor impacted your life?

“Being an AVM survivor has completely changed my outlook on life and has made me so much stronger. Besides the physical aspect of my diagnosis, my confidence has grown exponentially. I was able to realize that I am not alone, and through my TAAF Youth Ambassadorship, I have met many other survivors who not only have become my friends but also show me how lucky I am. Throughout my AVM journey, I was able to appreciate life more along with all of the wonderful things that I am able to achieve.” 

What is your dream? How are you achieving your dreams today?

“My dream is to become a lawyer while still promoting my platform on Arteriovenous Malformations and competing in pageants. I am achieving my dreams today because I never gave up. By persevering in the face of adversity, I only got so much closer to achieving dreams that I may never have thought possible. I am expanding my platform with The Aneurysm and AVM Foundation (TAAF) and working with various programs affiliated with law to get myself ready for a future of success.”

What advice do you have for teens who face big challenges in their lives but have big dreams?  

“My advice for teens who face big challenges in their lives but have big dreams is to reach for the stars and motivate yourself. Sometimes it is easy to want to give up when your dreams are big or they seem unattainable, but that shouldn’t stop anyone. When I think of big dreams, I just think about how I will look back on all the hard work that I put in to achieve them. You are your biggest motivator, so if someone thinks they can do something and they put their mind to it, they are more likely to achieve what they want versus someone who doubts themselves or doesn’t put in 110% effort.”

Thank you so much Erica for being an inspiration for all youth who face set backs in their life. Despite your obstacle with AVM, you have preserved and achieved so much. In addition, you have inspired and helped so many youth. In this interview itself, you have inspired youth!

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