What Stickler Syndrome and Pierre-Robin Sequence Mean for My Life

Most people have never heard of it, but for my brother and I, it’s what has shaped a good portion of our lives. We were both born with Stickler syndrome, and along with it came Pierre-Robin sequence. Simply put, Stickler is a hereditary condition that causes ear, eye, and joint problems, as well as gives a distinctive, often flat, facial appearance. Pierre-Robin is not a syndrome, but a set of abnormalities that include a small jaw, breathing problems, glossoptosis, and often a cleft palette at birth. Stickler and Pierre-Robin often come hand in hand.

Life with Stickler and Pierre-Robin meant and still means: health issues. Lots of them. I’ve had over 20 surgeries, all involving ears, eyes, or my mouth. My brother and I have a running contest of who’s had the most surgeries. He’s currently winning.

Stickler and Pierre-Robin affect everyone differently. For me, it’s mostly affected my ears and eyes. I have horrible eyesight and have had multiple procedures to correct tears and holes in my retinas. My eustachian tubes do not function well, my eardrums frequently do not work properly, I get chronic ear infections, and I have a permanent hearing loss. I’ve also grown up with many ankle problems from spraining them so frequently. On the bright side, I’m extremely flexible and have always been able to do the splits.

It isn’t always easy having this condition. It means never knowing how I’m going to feel when I wake up, since the weather affects my ears so much. It means going to specialists multiple times a year. It means if I relocate, wondering if I’m going to be able to find a doctor who will take excellent care of me and understand my condition. It means random joint pain all over my body at sporadic times. It means insecurity because my face looks a little different and feeling like I’m not as pretty as other people. It means wondering what life will look like when I’m elderly, because my body already feels like it’s falling apart at 25. It means feeling frustration when people don’t understand my health difficulties because I “don’t look sick.” These, along with many other problems, can make “normal” life a bit of a challenge.

However, having Stickler and Pierre-Robin also means I have a better understanding for others who are fighting health difficulties that are mostly invisible. It means that even though some days I get so tired of my body betraying me, I find the strength to keep living life strong. I may have to slow myself down a little more, but I’ll never let it make me quit.