She’s dealt with people staring at her ever since she can remember being conscious of it. Though it doesn’t bother her, and goes ignored by those who know her well, she wishes people who don’t know her would simply ask their questions, rather than assume.
She’s been branded, not by her birthmark, but by the people around her.
Junior Alex Bolton was born with a port-wine stain on the left side of her face. Its medical term is nevus flammeus, and it is what doctors told Bolton’s parents might cause glaucoma or even mental retardation in their newborn’s later life. Fortunately, Bolton has neither of those things, but she has had to deal with apprehension and even judgment, especially when she was younger.
“I know that people are going to look and I know people are curious, that’s what we are naturally. So, when I do see people stare it doesn’t bother me other than the fact that I wish they’d just come up and talk to me about it instead of wondering or making assumptions. It kind of bothers me, but at the same time I understand that people are going to be like that,” Bolton said.
“But for the most part, here especially at Century, people are very kind about it and courteous enough not to stare too long or to just come up to me and ask about it.”
Unfortunately, it took quite a bit of time and name-calling before she could become completely comfortable with it.
“It did make me feel bad and different,” Bolton said. “It did bother me when I was younger but I knew that the people who didn’t care about it were my real friends. And that’s what I thank my parents for — helping me understand that.”
Port-wine stains get their color from a group of blood vessels, usually on the face, that never stop growing. Sturge-Weber syndrome, although rare, can be associated with port-wine stains. Children with Sturge-Weber often suffer from all or a combination of seizures, glaucoma and mental retardation. Until Bolton was about a year old, her parents had no way of knowing if she had the disorder.
“When you’re a mom and this is actually a possibility and you can’t tell until later on, that fear wasn’t just that day. That went on for the first year of her life,” Bolton’s mother Melanie Adams said. “It was devastating at first. There was always that fear there, but it was kind of faded.”
In elementary school, Adams would go to Bolton’s class to educate her classmates on what the mark actually was and answer any questions that they may have had, which Bolton says helped.
“I just decided that it was very important to go in,” Adams said.
Dermatologist Richelle Knudson says when patients first come to her as adults or teenagers, they are usually inquiring about treatment. When infants are brought to her, she has to check for any other serious conditions associated with the birthmark.
“It’s more common to not have abnormalities, because this other medical condition is very rare,” Knudson said. “The risk of glaucoma is less than 10 percent. And usually that’s the most common one, especially if it involves the forehead or right by the eye.”
Although Bolton is unaffected by this condition, she is still going through laser treatments for the birthmark on her face. Laser treatments do fade the birthmark, sometimes significantly, but the purpose is to eliminate blood vessel growth.
“The reason behind getting rid of the port-wine stain is not necessarily cosmetic. It’s really a medically-necessary surgery,” Adams said.
Negative side effects of the treatments include bruising, swelling, and a risk of change in eye pigment. Despite all of these, Bolton’s results have been positive, and her birthmark will be nearly completely faded in about three to four more treatments.
“Usually with port-wine stains they don’t go away completely. We can fade them with the laser treatments but the majority of the time I would say there’s always going to be a little bit left over in the background, though much lighter,” Knudson said.
Knudson says each person’s reaction to the treatments varies mostly due to the location of the port-wine stain. Ones that are closer to the nose often do not respond as well to laser treatment. Bolton is happy that her treatments are going well, but she has had to come to terms with potentially losing a characteristic that has been very much a part of her since birth.
“I grew up on the fact that my birthmark was part of me and it kind of made me who I was. I kind of relied on that part of me to be unique. And then this last treatment I really realized that it’s not about things on your body that make you unique, it’s who you are as a person,” Bolton said. “So now that I understand I can kind of be OK with letting it go.”
Bolton will have to continue getting laser treatments for the rest of her life every four to five years to keep the blood vessels from continuing to grow again. Even before they knew that the birthmark will be barely visible in a short amount of time, Adams says Bolton has had a great attitude about it, and hasn’t let it affect how she values herself.
“Since she was a baby we always told her that she got a very special gift that only some kids can handle and she was one of them,” Adams said. “She just has such good self-esteem about it. She’s very proud of who she is and doesn’t want to cover it up, she’s not embarrassed about it. So my advice always to her was if someone has a problem about it, it’s not your problem.”
It wasn’t always easy, but Bolton is thankful for what having such a noticeable birthmark has taught her.
“It has made me stronger, but at the same time it’s made me more aware that everyone has something like what I have,” Bolton said. “And that sometimes they don’t get to choose their flaw that they have.”