Thursday, May 9, 2019

9 People to Follow on Social Media With Port Wine Stain Birthmarks

Just like the world, the Internet is a big place.

And if you're anything like me – born with a port wine stain birthmark, or a similar condition – you're constantly trying to find new people on social media to follow who look just like you. People who can relate to you.

But because only three in 1,000 are born with a port wine stain and not all are in plain site (either by the person's choice or by where it is located), sometimes it can be hard to find new friends who understand the journey you've been on.

Friends who can understand the stares you've encountered.

The comments you've heard.

The stories you have to tell.

...And we all need those people – even if we don't know them personally. Even if it means that we see their photo and we instantly remember, "I'm not the only one."

Several weeks ago I did a call-out to see who you follow on social media that lives with a vascular birthmark of any kind. Since May is Vascular Birthmarks Awareness Month, it seems like it's now the perfect time to share the list with you!

You can follow me on InstagramYouTube and Facebook.
This list has nine beautiful people on it. Some are everyday people, some are more well-known, and some are extra famous.

Some let their birthmark show all day every day, and some use makeup to enhance the mark in creative ways. And from time to time, a few of them choose to completely cover the purple hue, while picking other moments to let it shine.

Some have undergone medical treatments and some still go in for their laser treatments and glaucoma checks.

Many on this list sometimes forget about their birthmarks, some can't forget.

Bullying.

Staring.

Harsh comments.

Medical treatments.

Sturge-Weber syndrome.

Klippel-Trenaunay syndrome.

Each of their stories are similar, yet each other their stories are so different.

But guys...

I need you to remember something.

As you read this list and as you go out in public, hearing those comments, trying to ignore the stares...

You're not the only one.

You're not alone.

1. Paige Billiot

Paige is an actress and model living in the LA area. Living with her birthmark, she sees it as a tool of creativity. She's constantly doing unique makeup designs and photoshoots featuring her birthmark – and she often includes others in some of her projects. You can find a makeup video she created with Buzzefeed to highlight her birthmark here.



2. Amy Elsegood

Depending on the day, Amy is found sharing pictures of herself flaunting her birthmark, other days she's showing photos of herself looking glamorous with makeup. Whenever she shares about her birthmark, she always gets vulnerable in the most beautiful and relatable way. And while Paige shows the more creative mashup for when a birthmark and makeup come together, Amy has been known to do makeup tutorials for everyday looks.







The struggles and self confidence issues that you face when you’re single and you have something that makes you slightly different to the rest is difficult. Imagine that feeling of taking your make up off in front of someone new for the first time or getting on with someone and having that worry that once they find out you have a birthmark they will no longer be interested because you are not the ‘perfect girl’ Sorry for the imperfect Instagram post but I just wanted to show the reality and I know that there will be many other girls out there that feel or have felt the same! Girls should empower each other. Always be kind and remember what makes you different is your barrier against unthoughtful and unaccepting people. πŸ™ŒπŸΌ✌πŸΌπŸ’‹ (p.s. apologies for the Kat Slater dressing gown πŸ€£πŸ™ˆ) • • • • #birthmark #awareness #inspire #portwinestain #pws #bblogger #beauty #instaglam #nomakeup #natural #fbl #different #beautygram #makeuplove #makeupblog #fbl #selfie #girlpower #powerofmakeup #strong #beforeandafter #hudabeauty #makeup #makeupaddict #makeuplover #blogger #bbloggeruk #instabeauty #motd #reality #lashes
A post shared by 🌸 Amy Elsegood 🌸 (@amyelsegood) on

3. Ed Sheeran

Did you know Ed Sheeran is part of the birthmark buddy group? I didn't either!...At least, not until last year, when I saw this video. Because of a laser treatment for his port wine stain where the doctors forgot to use anesthetics, Ed quickly began to struggle with a struggle with a stutter. And that stutter? That lead him to music.



4. Andrea Dykes

I recently stumbled across Andrea's Instagram, and man...She's a beauty! She's a pro with the makeup, but doesn't mind letting her natural beauty shine.


5. Patience Hodgson

Lead singer of Australian band The Grates, Patience Hodgson, has a port wine stain birthmark on her arm. Patience sees her birthmark like a protective barrier, “I love my birthmark’s spectrum of color. When I’m warm it’s a kind of red-purple, like the colour of some plums and when I’m cold it’s a vivid, almost neon blue. I also like how it’s a kind of protective barrier protecting me against non-accepting and unthoughtful people.”



6. Danny Larious

Danny is all about fitness, travel, and sharing about his journey with his birthmark that he totally rocks. Within his beautiful photos, he shares about his everyday life while proudly also sharing about his birthmark in the process.







This is a portwinestain birthmark. It’s not contagious. We can swim in the same swimming pool. And my mom didn’t do drugs when she was pregnant with me this is just how I was born. πŸ‘ΆπŸΌ I’m lucky not to have too many complications with it that I hardly think of it as a disease but it is. Today’s #nationalrarediseaseday so I’d like to contribute to all the special people with rare diseases in the social media world. You are not alone. ✌🏽✌🏽✌🏽. . . . Portwine stains are more than just skin deep. It is a disease that affects the brain, organ and blood vessels. People are born with vascular anomalies that can worsen as they grow older. They require constant monitoring, laser treatments and sometimes surgery. There is no cure for vascular birthmarks. Many adults and children living with these birthmarks also experience frequent seizures and glaucoma. Today is rare disease day. Here is a picture of one kind of birthmark. If you search Instagram you'll find birthmarks with moles, some smooth, some hairy, some dark some light. They are as diverse as the people they live on. No matter what kind of birthmark or disease you have. Live. Live you're life in pursuit of happiness πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„ and be kind 😁😁😁😁 to all. Resist the urge to stare rudely at someone who looks different and instead say hello. Or if you are curious, ask about it politely. πŸ™πŸΌ✌🏻✌🏿✌🏾✌🏼✌🏽 #rarediseaseday #portwinestain #sturgewebersyndrome #birthmark #klippeltrenaunaysyndrome #iwasbornthisway #smile #fitfam #socialmedia #humpday #awareness #vascularbirthmark
A post shared by Portwinestained And Fit (@dannypws_fit) on

7. Berlange

My sweet friend, Berlange is a model living with a vascular birthmark – which also causes a rare condition known as Klippel-Trenaunay syndrome (KTS) in her leg. Her condition can cause all the typical symptoms a port wine stain birthmark can cause, like thickening of the skin, bleeding, and blebs. But with KTS, chronic pain can also be involved, and the bones can also be affected – just to name a few. While Berlange shares her beauty with the world, she also raises awareness for her conditions...while inspiriting the world in the process!






How about instead of focusing on trying to be perfect, reaching the unattainable summit.. we allow ourselves to be imperfect? How about we celebrate "imperfection"? "Imperfection" is actually the truth of beauty. Revive your light• Share your stripes• Bare your marks • • • • πŸ“Έ @osatoerebor MUA @malvarosebeauty Styling @livemylifed #BerlangeStory #BeRevealed #bestfootforward #bareyourbirthmark #kts #pws #perfectimperfections #redefiningbeauty #morethanamodel #milliondollarleg #breakthestigma #blackgirlmagic #underneathiam #comfortableinmyskin #embraceyourself #awarenessiskey #loveyourself #borndifferent #shareyourcolors #goddess #shinonegirl #differentisbeautiful #lavawalk #daretobare #untoldstories #fanmlakay #nolongersilent #pws #bareyourbirthmark #wlyg #lovetheskinyourein
A post shared by Berlange Presilus (@bellenge) on

8. Hannah Storm

Hannah Storm lives with a port wine stain. In the third grade, insecurity hit. As a result, she started going through a variety of painful medical treatments that left her with scares, in hopes of removal. Since then? She's learned about the improved and recommended treatments – and she's using her knowledge of vascular birthmarks to help others. As an adult with more information and resources, she's now helping other children get the medical care and surgeries they need for their birthmarks through what is now known as the Hannah Storm Foundation. To read more of Hannah's story in her own words, and to learn about her foundation, you can find that here.


9. Michelle Branch

While you can't see her birthmark in every photo, occasionally you can find this well-known singer's port wine stain under her right eye and above her lip. Occasionally she even brings awareness to the topic on Twitter and on Instagram, and once on Tumblr she shared, "I was teased growing up about the port wine stain birthmark I have under my right eye. Even to this day if I’m recognized when I don’t have makeup covering it, it makes me tremendously uncomfortable. I know I shouldn’t care about what people think but…surprise!"



I know the list can be much longer. In reality, this is just a sample size of many more amazing people.

If you have anyone you'd like to add to my list – feel free to email me or leave a recommendation in the comments here on my blog. In the future, maybe I can write up a part two!

The Travelin' Chick,
Crystal

6 comments:

  1. have you connected with Katie Crenshaw? instagram.com/katiemcrenshaw

    her beautiful little girl, Charlie, is a member of the vascular birth mark club!

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