The story of Lindsay
I was born with a rare congenital disease that baffled every doctor my parents took me to. It took until I was 14 years old to be correctly diagnosed and finally have the questions put to rest. I was born with CLOVES Syndrome, which stands for: Congenital, Lipomatous, Overgrowth, Vascular Malformation, Epidermal Nevi, Scoliosis/Skeletal/Spinal Anomalies. Composed of vascular, skin, bone, and spinal abnormalities, this syndrome is caused by a mutation in the gene PIK3CA. Each case is unique, and in my case, I have an overgrown leg and foot, disfigured toes, scoliosis, and a vascular malformation on my abdomen.
With this disease comes many challenges, including both emotional and medical. Over the course of my life, I’ve had several surgeries to try and curb my symptoms. As a baby, I had 2 surgeries to stop the growth in my overgrown foot. Later on when I was getting ready for middle school, I had 2 more surgeries to stop the growth in my tibia and fibula so my legs would even out when I finished growing. In high school, I had a few more surgeries to remove my large birthmark and a portion of the vascular malformation on my abdomen.
Other than going through the many surgeries and medical procedures, I never really realized my differences growing up. My family has always been supportive, and I have a strong group of friends that have supported me all the way. It was when I got to high school that things got difficult. I saw girls wearing all types of cute shoes, and all I could think was the fact that I will never be able to wear any shoes like that in my lifetime. Because of my overgrown foot, the only shoe I could wear was the largest size New Balance tennis shoe. Even when I dressed up, I was stuck with tennis shoes. Being a girl, that’s really difficult to come to terms with. There were days when I would sit in my room and ask God, why me? Why did I have to be born with such an ugly syndrome that no one else in the world had? There were a lot of nights of crying myself to sleep, asking questions like these. I felt so alone.
When CLOVES was discovered, a lot changed. I knew what I had and why I had it. I met others like me, eliminating the feeling that I was completely alone in this world. Finding that community of other people who understand what I’ve gone through helps so much more than people may think. It’s life changing. Support does wonders.
When I got to college, I was nervous about what people would think about me and if I would be able to make friends. I’ve always been afraid of meeting new people because that meant I would have to deal with their shocked stares and answer their questions like what happened to your foot? It always felt awkward for me having to address that when I met new people. It still does. But in college, I found myself surrounded by people who completely looked past my differences. When people can look past my physical abnormalities and see me for me, that’s when I know they are true friends. I will forever be grateful for people like that.
Because of the incredible people that I met my freshman year, college was much easier than I expected. I began to build up confidence in myself, knowing that I had an amazing group of friends who didn’t care what I looked like. After starting college, I realized that it’s not that scary to meet new people. It’s not that nerve-wracking to be thrown into new situations. If I have a sense of confidence in myself and don’t forget that I am more than my syndrome, I can handle those tough situations.
Living with CLOVES hasn’t been easy. Every day that I walk out in public, I have to hold my head high and walk strongly past every pair of eyes that stare in shock at my foot. I have to ignore the whispers and points as I walk past. The staring will never go away, but the embarrassment can. I will never be embarrassed to be who I am. I will never be embarrassed of my syndrome because I know who I am, and it isn’t CLOVES. That’s just a part of me. My syndrome does not own me. I own it.
It’s always going to be hard living with differences, but as soon as I changed my mentality, my life changed for the better. It’s about staying positive and not caring what other people may think. You should never feel ashamed of who you are no matter how different you look. Those are the things that I tell myself every day, and I have gotten more confident ever since.
CLOVES is one of the rarest diseases in the world, only affecting about 200 people worldwide. People stare because they don’t know what I live with. They have never seen this rare disease before, but that is why advocating and spreading awareness helps. And being a part of a community with people like me helps the most. Ever since I realized I wasn’t the only person in the world living with my rare disease, my mentality gradually began to improve to what it is now. That goes to show how amazing support can be.
Now, I do everything I can to spread awareness on not only CLOVES Syndrome but for all rare diseases as well. The more we share our voices, the more opportunity for research there is. By sharing our stories, we are shedding light on the reality of living with rare diseases. On Rare Disease Day, we take one step closer towards making a positive difference for those affected by rare diseases.