A rare disfiguring disease won’t stop me
By Arianna Faro
Since before I was born, doctors speculated that I had Klippel-Trenaunay (KT) syndrome, a rare circulatory disorder. The entirety of my left leg and left side of my buttock are affected; the lower part of my left leg is more than twice as big as the right. I have varicose veins that cover my whole leg, and a purple port-wine stain that stretches from my thigh to my knee cap. It’s undeniable that having a rare chronic condition like KT has presented me with an array of obstacles, but in spite of this, I realize how blessed I am—I’m fortunate enough to even have a leg to walk on.
Growing up, I had a number of operations as a result of my KT, but they didn’t impact my life in a major way. I still went on vacations, had great times with family and friends and, on most days, could live life as a normal child. By the time I entered middle school, I was in good health; I missed little school and was caught up in all of my classes. In retrospect, I wish I had a flashing neon sign to tell me to enjoy those carefree days, as they soon came to a screeching halt.
I’ll never forget the day of my high school orientation. I couldn’t wait to start high school and explore many new opportunities. But by the time I came home on that first day, I was extraordinarily tired. As I laid down on my bed, I felt an unfamiliar kind of sickness. Crying from the pain, which radiated from my left leg with a kind of intensity I had never experienced, I got the chills, a throbbing headache, nausea and cramping in both my legs. My temperature shot up to 105 degrees, and I’d never felt worse. My parents took me to the emergency room, where I was diagnosed with a severe cellulitis infection in my left leg.
I spent my first week of high school in a hospital room. It was the first of more than a dozen hospital stays during my high school career, as severe cellulitis infections became frequent occurrences. In all, I missed about a third of my first three years of high school, which made it hard to keep up. However, I was lucky enough to have an amazing guidance counselor who helped me manage my work and stress level. I honestly have no clue how I could have made it through high school without her.
Still, I constantly felt stressed out. When I wasn’t sick, it was almost as though I was waiting to get sick. It was hard to appreciate the good days, because I knew it was just a matter of time before I would get sick again. But after many infections, I realized that I couldn’t stay sane with this attitude. I decided that nobody knows what tomorrow is going to bring, and sitting around obsessively worrying was only preventing me from enjoying life.
I also adjusted my attitude about talking about my condition. Usually, I shied away from talking to classmates—and even friends—about it, thinking that keeping my medical life separate was essential to living normally. But it wasn’t possible: KT is messy and will bleed—literally and figuratively—into the other areas of my life. So I learned to tell people about it. I know first-hand that having a rare medical condition can cause feelings of isolation and loneliness. But it’s important for people who feel comfortable enough to share their experiences with others, and why I’m adamant that I share mine.
Over the years, I’ve come to understand that you have to embrace yourself for who you really are. While I am a victim of KT and its side effects, it’s important to me that I don’t live or think like a victim. This September, I reached a milestone. I’ve been infection-free for a year. I’m picking up where I left off before the infections started, rediscovering old hobbies and picking up new ones. And I volunteer here at Children’s Hospital Boston, where I’ve been treated. I absolutely adore working with children and I think I can help them understand that everyone has their own personal battle in life, whether it’s physical, mental or emotional. And this fall, I started college. While I’m not quite sure what my future will bring, I know that KT will be a part of it. I also know that I won’t let it affect my ability to live a happy, long and successful life.