A Port-Wine Stain is a birthmark in which swollen blood vessels create a reddish-purplish discoloration of the skin. They are caused by an abnormal formation of tiny blood vessels in the skin. They are a benign congenital capillary malformation, and they occur in 0.3% of all newborns and mostly appear at the face and neck areas. PWS are rarely eliminated without intervention and a large majority of them can worsen with age.
I have a port-wine stain on my right, arm, hand, neck/chest, and shoulder blade. When I was born, they took me away from my mom and accused her of doing something to me and that’s when all the weird stares and remarks started. A resident from the University of Michigan informed my mom of what I had.
I have been receiving pulse-dye laser treatments for some time, this treatment lightens the color of the birthmark by destroying the capillary malformation by selective photothermolysis. From the time I was a small little baby till about 4 years old I received treatments pretty much every 6 to 8 weeks. I had to stop getting surgeries done because we lost our insurance. I started again when I was 13 years old and have been doing it ever since. My port-wine stain is over such a large area that I’ve never been able to get the procedure done awake.
I’ve learned to feel comfortable in my own skin over my 21 years of life, but the second someone has a rude remark, it breaks me inside and I no longer feel confident. Just last week, I had a procedure done and a receptionist at the desk literally gasped and was like “Oh my god, what’s wrong, are you okay? That looks like an awful burn.” Within 30 seconds I broke down in tears to my mom. Anytime I go to the hospital or see a new doctor, I always here “you have a rash or oh no, what’s wrong with your skin, are you okay?” or “are you having an allergic reaction?” I know that these people are just ignorant and have no filter, but i can’t help but feel totally awful whenever people say something about it. I try so hard to hide it and when I don’t I’m trying my best to be confident and hope no one will say anything, but there’s always some rude person who has something to say.
Here’s my questions for these people; 1. Have you ever seen a really bad burn? Because if you have, it doesn’t look like my birthmark. 2. If I was having an allergic reaction, don’t you think I’d be acting weird or reacting to it or know that I’m having one? 3. Don’t you think there is a better way to ask about something than being overly fricken’ dramatic? Basically, THINK ABOUT HOW THAT PERSON IS GOING TO FEEL WHEN YOU REACT LIKE A COMPLETE RUDE PERSON! If they don’t seem phased by it, then don’t say a word, seriously!! If you’re a medical professional, read up on dermatological birthmarks, and if you’re a medical professional, if your patient doesn’t say anything about it, clearly it isn’t a problem and that’s not why they are being seen in the first place by you, if they felt it was necessary they would mention it. A lot of your reactions need to be thought out with common sense and respect, before you open your mouth. Having a red/purple birth mark on your arm and chest like me or people who have it on their face, just so you know there is a lot of anxiety that goes into having one. I don’t know about others, but I know for my mother and I it’s always been about making sure I’m not embarrassed of myself and trying to forget that I have it. It’s incredibly rude when people react like we’re disgusting or like we have something wrong with us. Just because physically you see something that isn’t exactly normal, doesn’t mean individuals with port-wine stains and hemangioma’s are disgusting or weird or contagious.
I go through moments where I wish I could cut off my arm because I’d rather have people look at me and say nothing than freak out and have a psycho reaction when they see it. I’ve been called Barney, alligator skin, a burn victim, just anything you can think of that would honestly really hurt my feelings. When I meet a guy, the first thing I think of is how they’re going to react to it, are they going to be embarrassed of me? My left side is my good side because I don’t like my hand or arm being shown in pictures. I hate pictures that show my chest because I wait for comments from people asking what is wrong with my skin, and it doesn’t happen often but every now and then I get that rude person who doesn’t have a filter who say’s something.
My main goal in life was to be a cosmetic dermatologist or a plastic surgeon and I wanted to place an emphasis on treating port-wine stains and hemangioma’s. Over the years of getting laser treatments I have seen countless kids who have it in the same spots as me or who have it on their face, I’ve seen people who have never received treatments and I’ve seen the stress that goes into having it first hand and witnessing it with others. I wanted to be able to help treat this malformation while offering a personal insight that just because someone has this, doesn’t mean their ugly, that it doesn’t mean they need to be embarrassed of themselves. I wanted to use my personal experience to shape how other children and adults feel about themselves. Now that I know I won’t become a doctor, I hope to find other ways to educate others on what port-wine stain is, to help people who have it to deal with the criticism and anxiety that comes along with having it. I hope that one day, people will learn more about when it is okay to say something and when it is okay to say nothing. I hope one day, parents and children and adults who deal with this learn to love themselves as I’m trying to do everyday. Also, if you have it or know someone that does and who hasn’t had treatment, look into it. Most insurance companies will cover this procedure because it can cause problems down the road depending on the location of the birthmark.
My main point of this post is to educate my followers and others about what I actually have and that if you have made remarks about it, that I don’t appreciate those remarks and I hope you learn that since I didn’t appreciate it, that others who have it that you may say something to, most likely don’t appreciate it either. Learn when to say something and when to say nothing at all. Learn to not judge about what’s on the outside because you have no idea who that person is or what they’re feeling. There are better ways to go about mentioning your curiosity than the ways you do. Instead of asking if that person is okay or making them feel embarrassed, say “Hey, I’m not trying to be rude but I’m curious as to what this is?”
I’m trying to learn to love myself every day and I really hope I can continue to get my procedure done because even though I’m trying to love myself, I still hate this part of myself. It’s definitely not easy for me. This is the one part of myself that I wish I could change, but even though I can’t completely change it, I can at least get some type of change that makes me feel a little better with my treatments.