Teenager with WS

When I was a baby, only six months old, it became apparent to my parents that something was wrong – one of my very dark brown eyes had changed gradually to a bright blue color. Doctors had nothing to say; my vision seemed normal despite the change and they brushed it off. However, when I was around three years old, gray hairs started appearing. Concerned, they rifled through medical textbooks in hospital libraries, hoping to find an answer. They found only one possibility: Waardenburg’s Syndrome. It explained a lot of my physical traits that they hadn’t otherwise noticed as abnormal, such as a wide nasal bridge, connecting eyebrows, and white spots on my arm. Several doctors since have confirmed that I have WS.

In Kindergarten, a nurse took me in for the compulsory school physical exam. They did all the normal tests (height, weight, eyesight, etc.) until they came to hearing. The nurse quickly found that I was completely deaf in my right ear. My preschool teacher had previously noticed that sometimes, when I was called from behind or from the side, I wouldn’t respond. As an otherwise obedient student, she was concerned about me. But my parents didn’t think much of it until the Kindergarten nurse phoned them. It is still unclear whether I was deaf in that ear from birth or if it came on later in my life. Since then we have made it a point to visit an audiologist annually, though it is most unusual for WS to have their remaining hearing deteriorate.

Kindergarten was also the first time I noticed something was different about me – I had always been very confident (or perhaps indifferent) of my appearance. I remember holding my teacher’s hand, waiting for my bus to come, when a cheeky-looking girl came off of a bus and approached me. “What’s wrong with your eyes?” she asked, rudely, “You look so weird.” My teacher was my defender, quickly reprimanding her, but that wasn’t enough to make me forget the incident. When I came home, I asked my mom if something was wrong with me, if I really did have differently colored eyes! Apparently I hadn’t noticed it until then. I spent several hours examining myself in front of a mirror, very puzzled.

Since then I have had several comments like that girl’s – I have learned to brush them off without being too hurt. My eye has turned a lighter, more noticeable blue since my baby pictures; it is very strikingly offset by my brown skin and other dark brown eye. I have even had entire busloads of children whispering loudly about my appearance, and have since figured out that the most important thing is to simply ignore them.

I have actually become confident enough in my appearance that contact lenses seem to be more trouble than they’re worth. Hearing aids bother me, too. In fact, I think that if I wore contact lenses, the kids at my high school (who have become so accustomed to me over the 11 years I have attended the school system) would be more shocked to see me with regularly colored eyes! The only physical thing I change is my gray hair, which I dye black. My school has become so used to me that I am the reason my parents never move. The acceptance that I get there is psychologically beneficial to me.

Lately, I have been experiencing intestinal problems, which occasionally accompany WS. It may or may not be Hirschsprung’s disease, but in any case, I’m not going to let it get in my way.

Despite having WS, I have excelled academically. I am a high school sophomore currently in all honors and AP classes; in fact, next year I am skipping lunch to take an extra AP course. I am an honor roll student, member of the Spanish Honor Society, and president of the school Red Cross Club. I play piano and reading is my favorite hobby. I am proud to say that WS doesn’t get in the way of my happiness or my goals.

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