Growing up in the tiny suburbs of little ole Vermont, I never saw people that looked like me. Ever. There were like three Asians in the whole school until high school, and I was friends with all of them…no joke. And there was that one and only time I saw someone else, a stranger, with a facial birthmark in public.
When I was around the awkward age of twelve, I remember seeing a woman at the grocery store with a large light pink birthmark on her face. It must have been a faint Cafe Au Lait birthmark (not a dark Port-Wine Stain like mine). She had a baby with her who was sitting up in the shopping cart. I remember staring at her from a distance, almost hoping that she’d catch me and make eye contact. A nod of recognition is what I was hoping for. Her plump, bald baby was perfect looking. No mark on his face. I didn’t know much about genetics at the time, but I remember wondering if birthmarks were or not …I was fascinated, intrigued. I wanted to talk to her and ask questions. But I never saw her or anyone else with a facial birthmark again in real life (or as my gaming husband says IRL) until I found birthmark (support) groups on Facebook.
I grew up in the ’80’s, one of the best decades in modern history. I remember a time when, believe it or not, there was something called “dial-up” (cue in flashback of static connection sounds). One landline per household; in high school AOL and Instant Messenger (AIM), cue the opening door sound, was our social media. This meant pointless AOL chatrooms or having a list of friends who you could directly message (while your friends were rocking out to CD’s in the background). Now only a couple of decades later social media has exploded. How mind-blowing that most people carry the internet in their pockets! And with social media, the coolest thing I’ve found by far, are Facebook (support) groups in which you can connect to other communities of people who share commonalities with you in some fashion.
There are many fascinating groups I’m a part of from worm composting (no joke) to Bernie Sanders and all sorts of awesome things in between. But the most meaningful ones are the Facebook support groups for people with birthmarks like me. In many of these group members are either people who have birthmarks themselves or parents whose children have birthmarks.
I recently turned 33 years old, and it wasn’t until this year that I discovered there were birthmark support groups on Facebook. I so wish I had known earlier! I’ve met compassionate, inspirational people of all ages from all around the globe (some as far as Australia and the U.K.), who share their birthmark stories, experiences with laser treatment, questions, photos of their beautiful birthmarks, as well as theirs glorious highs and frustrating lows…and of course, there are many lows. But we uplift and encourage one another.
Listen, I grew up in quaint Vermont where it’s over 95% white. As an Asian American female with a facial PWS, I know what it means to look different, and I mean
reallywicked different, compared to other people who surround your everyday.
There is a warm sense of community and that genuine feeling of being “normal” for a change, that I cannot get anywhere else. Although I don’t know these people in real life, we still commiserate with one another like old time friends, and that sense of unity is priceless.
BIRTHMARK FACEBOOK GROUPS
Facebook Groups for People with Birthmarks
- Birthmark Treatment Support: Port Wine Stain – Pulsed Dye Laser – Vascular “Embrace the Dots”
- Birthmark; Port Wine Stain Family and Friends “It’s Just a Birthmark”
- Birthmark Support Group – Adults with Birthmarks United Kingdom
- Birthmark Buddies
- Port Wine Stain Birthmark- New England support group
DOCTORS & ORGANIZATIONS
Furthermore, there are a few great dermatologists and surgeons who specialize in (vascular) birthmarks and hemangiomas, a few of whom run FB live Q & A sessions. Often times, Dr. Linda Rozell-Shannon, the founder of Vascular Birthmarks Foundation and Dr. Waner of the Vascular Birthmark Institute will collaborate and answer questions on a live video forum.
If you are one who wears a beauty mark and want to connect with others who do too, check out those phenomenal birthmark support groups on Facebook (above). I’m so grateful to have found these groups and instantaneously connect with the people in them. Hopefully these can be a source of comfort, education, and resources for you, too. Please share this with others whom you think may benefit.