Tell Your Story
Share Your Story and Raise Awareness
How did you become involved with VBF? Why do you feel it’s important to raise awareness for vascular birthmarks and the related syndromes? Please share your story with us. Please email your photos and story to VBF at email@example.com
Hi, all the way from Australia!
Lately I've taken it upon myself to do my own researching on birthmarks as I have spent 20 years going through what I feel has been millions of laser treatments, scans, doctors, creams, injections, hospital visits, painful baths and restless sleeps after treatments and nothing has worked.
I have a large port wine birthmark from my lower back/top of buttock area all the way down my left leg to the tips of my toes.
I'm writing here because I want to reach out to all family and friends of people with birthmarks. I want to help you guys all understand what we (people with birthmarks) go through.
Like most of the amazing, heart-warming stories I've read here from parents, I was lucky enough to have parents like you who started investigating and soon after treating my birthmarks from when I was only a few weeks old.
My first recollection of treatment was when I was about 5 years old and I loved it because I was able to take a day off school and go into the city with my mum and then when I woke up my dad would be there to pick me up and take me to McDonalds as a treat! But I also hated it.
At that age, I remember throwing a tantrum before going into hospital using the excuse that I didn’t like the smell of hospitals. Then mum would remind me that I would thank her when I'm older because the laser will help take away my birthmarks. I used to feel sick at the smell of hospitals and today I'm able to realize I psychologically associated the smell of hospitals with the agonizing baths and pain I went through after the treatments.
A few years later at about age 8 I was fed up with the pain and extensive horror I had for hospitals that I asked mum to stop taking me in for treatments.
During primary school I didn’t really care about my birthmarks. I was sporty, popular, energetic, gusty- they (my birthmarks) never really affected me, apart from the occasional person that would embarrass me and put me down by making fun of my leg or asking me “what was wrong” with me, but at that age I soon got over it...until I went to high school and went through puberty.
I'm now 20 and I still am insecure and refuse to wear shorts, dresses, skirts etc. It affects me a lot in my everyday life. I used to be an amazing swimmer when I was younger. I now refuse to go to public pools or beaches where there are people- I always go to secluded beaches or lie by my pool through summer. Don't get me wrong, I still go out in summer and live my days to the full, but most of the time I'm over-dressed for the weather and end up just being uncomfortable in the amount of layers I'm wearing; e.g. stockings with dresses- all through the year. But I think, "hey, at least I'm not uncomfortable with the thought or knowing that people are talking, laughing, pointing at me"- I just look like a regular person when I have stockings on- just crazy that I'm over dressed.
I'm more than sure there are stronger people out in the world who really don't care at all what people think about them- I wish I was one of them...but until you actually live a day in the shoes of someone with an obvious mark on their bodies- don't tell them to "get over it" or "No-one cares". Because if that was the case there wouldn't be those rude, nosey, hurtful people that may look at you twice, or point, or laugh, or even have the guts to be a stranger and come up to you and ask "what is wrong" with you.
There is not much you can say or do directly to your child or loved one with a birthmark. The best thing you can do is (if you're a parent) try your hardest to start treatment on your child at the youngest age possible and continue treatment until you have received some results or the child says (like in my case) enough is enough- it's not working.
I have had about 2 years of treatment on and about 2 years off my whole life. Especially through high school I went through stages of demanding for some change- for something to happen. It got to the point where I would do anything- including one treatment where I asked for no drugs thinking that nothing else was working this might help- well it didn't. It was possibly the most agonizing pain I have ever gone through. It was like sticking my leg under a sewing machine for about an hour straight- and that wasn’t even my whole leg- that was just a small section. Then after I was blistered, sore, swollen and could not walk, sit down, sleep- anything. But I bared the pain because I was so eager for it to work. The only time I would ever give up would be for a short period and then I would get back into treatment again.
My last bout of treatment was, I think, the last for a very long time. After a long, long time of denial I have come to the conclusion that it seems I will be living with this birthmark for as long as I live and that if people have a problem with that then that's their loss. It's only recently I'm starting to become comfortable within myself (very small steps!) and I have a great group of close friends, family and even boyfriend who make me feel comfortable and feel good about myself. My friends and I sometimes makes games with it. If a stranger asks what is wrong or they point or laugh my friends or I would make up a story that I saved my family’s’ lives from our burning house when I was little or something along those lines (it changes from time to time) and that will shut the person down and make them sorry for asking!
So to everyone who doesn't have a birthmark but knows someone who does...my best advice, is just keep trying until your loved one is satisfied with the amount of effort you both have been through to try and vanish the birthmark. I think my parents realized a long time ago nothing was going to change with my birthmark but whenever I asked to have another treatment they'd be right on the phone organizing another bout of laser just so I could see that we have/did fight, very hard and persisted. And for the loved ones of the unlucky patients like me that's what you have to do as well; show them you do want to help them and keep their spirits up by helping them fight until they are contempt. And most of all keep their spirits and confidence levels up by complementing them on anything but their birthmark...I promise you, ever complement is awesome!
Just one to think about...I wore a dress out with no stockings (!) for the first time in many years the other night and asked my close girlfriends honestly if they could notice my leg. Most of them said “No, no, don’t be silly” (which is not what you want to say, because obviously you can see it) but one of my girlfriends said “Yeah, you can I’m not going to lie, but it’s not that obvious- especially at night, in heals and a tan- no-one is going to look down at your leg in a crowded place”. THAT was one of the best pieces of confidence boosting advice I’d ever been given. As a result I spent a whole night out showing my leg with the attitude that if anyone has a problem with it- then they are just not worth knowing, and I had a ball of a time!
If anyone wants to ask me questions/queries, I’m more than happy
to help out. Please feel free to e-mail me: firstname.lastname@example.org.
VBF has networked over 35,000 children and adults into treatment
Tyler Salvador and his twin sister, Shaine.