8-18 Media: Life with Gorlin Syndrome
EDITOR’S NOTE: This is part one of a two-part series. Part two will be published in the Feb. 20-21 weekend edition of The Mining Journal.
I was born two months early, exactly on the date of my mother’s 25th birthday. As a premature baby I spent six weeks in the NICU enduring health conditions that luckily do not still affect me today. However, another way to develop a health condition is genetically or spontaneously. At birth, my mom developed a condition that didn’t affect her until she was 19 years old. At 19 years old, my mom was diagnosed with Gorlin Syndrome, which is scientifically known as Nevoid Basal Cell Carcinoma Syndrome. It increases the risk for skin cancer and creates tumors that appear in the jaw area. If left untreated, the tumors can cause extra health risks, so each time one or more is spotted, one must undergo surgery to remove it.
Back in 1999 when my mom underwent the surgery, there were not many advancements in the research and treatment of this condition, so to remove the tumor that was nesting in my mom’s lower jaw, the doctor had to cut through the bone and create a denture. Miraculously, my mom’s recovery went smooth and she experienced no pain. The risk of Gorlin’s tumors tends to decline in your twenties, making it very rare for adults to be affected by the condition. My mom has not had another tumor, though due to the increase of the likelihood of cancerous spots on the skin, my mom has frequently kept in touch with her dermatologist and has underwent three dermatologic surgeries.
There is a 50% chance that people with Gorlin’s who conceive a child will pass on the condition to the child when it is born. When I was 8-years-old, after having experienced two ear surgeries to solve my hearing problems that were the result of a previously unknown gluten allergy, with one more surgery on the way, we found out that I had indeed inherited the condition and would need to travel eight hours from Marquette to Ann Arbor to have surgery at Mott Children’s Hospital. Somehow, I’ve managed to maintain my extreme fear of needles throughout the years without having much of a care in the world when I find out I need yet another surgery, though as the date draws near, nerves do tend to appear.
So, when I found out about the first trip, I made sure to pack all of my favorite stuffed animals and coloring books, as well as my Nintendo DSI, which for my generation may as well be called retro. My mom took care of packing the necessities and we drove down to Ann Arbor. I almost immediately became bored out of my mind, but over the years I have become so used to the same trip that as long as I have plenty of snacks, I am content to stare mindlessly out the window the whole time. We checked into our hotel room at the Red Roof Inn, and I was amazed to see that a Big Boys venue was attached to it. We had Cottage Inn Pizza for dinner, watched some TV, then went to bed.
The next morning was the toughest. I couldn’t eat or drink anything besides water or apple juice, which I hate because it is so bitter. As we drove to the hospital, I was sick to my stomach with both nerves and hunger. But I couldn’t help but smile when we walked into the hospital and I was met by so many unique things: like the statue of Super Man and Spider Man, many cafes, gift shops, and the warm hospitality and kindness of everyone who works there. We took an elevator up to the third floor and walked to the front desk, which would later become the ritual that started each surgery.
EDITOR’S NOTE: Anja McBride is a sophomore this year and loves to read and play tennis.