The Vascular Birthmarks Foundation

Dr. Linda Rozell-Shannon, PhD President and Founder

Received a Frank Catalanotto Perseverance Scholarship in Aug. 2015

Life with a birthmark hasn’t been easy. I’ve known that I’ve had an AVM since I turned 12. At the time I was initially diagnosed, I thought I was a freak because I had some weird growth in my thigh, and I refused to let anyone outside of close family members know what was wrong. I hid my condition like some terrible secret buried in the back of my proverbial closet. It’s been a tough road with lots of surgeries and treatments, but I’ve finally progressed to the point where I’ve made peace with my AVM.

Considering that AVMs and vascular birthmarks are so rare, my condition wasn’t one that I could easily talk about with friends during school. Most teenagers will accept broken legs or injuries as an explanation for using crutches for a year because it’s something that everyone understands. On the other hand, very few people (if any) have ever heard of vascular birthmarks, and most are afraid because they’re different. My doctors list looks like a scavenger hunt because I had to go to so many specialists since most didn’t know what to do. I’ll admit that I was very afraid because I had never even heard of an AVM before being diagnosed. I was scared when I found out I had one. I was never a sickly child and never expected to go to a hospital and have surgeries at such a young age.

Additionally, very few people could give me a definitive answer of any sort about what was going on. One person would tell me I had cancer, and the next would say no and say I could be cured; others said I would have to live with this condition for the rest of my life, and another even stated my condition could lead to amputation. My family and I decided to ignore the doctors’ predictions for my future, and just persevere and be the person I wanted to be despite having an AVM.

While considering colleges, the biggest factor was going somewhere that could help me achieve my dream to reduce the pain and recovery time associated with surgical procedures by inventing new medical technologies and medicines that doctors and hospitals can employ. I’ve been through a lot in the process of treating my AVM, and I want to make that process easier on patients who have to go through surgeries in the future. I’m heading to UC Riverside this fall to get the training and education I will need so I can do the research to fulfill my dream. Some ideas I have been considering for research are an IV line that doesn’t hurt to put in, possibly by using laser guiding imagery for placement. Another idea is to work in the field of DNA repair as a possible route to fixing whatever causes AVMs to pop up in people.

My challenges with my AVM ignited a passion in me to help others who are in similar situations. One of my high school extracurricular activities was working with a club called CHOCers, whose purpose was to fundraise and support the Children’s Hospital of Orange County. I wanted to help the kids in the hospital in whatever way I could, and I could tell that something as simple as donating a stuffed animal or caroling during the Christmas season meant a lot to them.

With the education I will get at UC Riverside, my hope is to be able to create technologies to make life a little less painful for those with experiences similar to mine and be a superhero for them. Maybe not a superhero like you see in cartoons, but an everyday real hero like firefighters, police officers, doctors, and scientific researchers. Despite all of my challenges, I was still the youngest person in my graduating class (having skipped a grade as well as missed nearly a year due to hospital visits). I remain driven to succeed, to improve, and to never give up on my dreams.

My thanks goes out to the team at the Vascular Birthmarks Foundation for allowing me to get that much closer to achieving them. Click for photos and July 2015 interview.

To make a donation in Cassie’s honor, click on her JoinMe page