VBF Global Ambassadors are a global network of advocates who work together with VBF to build awareness of vascular birthmarks and funnel support to every corner of the birthmarks communities. In most cases, these are not medical professionals. Many are an adult who has or had a vascular birthmark or who has a loved one with a vascular birthmark. In the directory below, you’ll learn more about their personal stories.
If you or someone in your family has a birthmark and you’d like to speak with others who have had a similar experience, the Global Ambassadors can also help find personal support from other patients and families based on their own unique experiences.
Director, VBF Global Ambassador Program
I’m 42 years old, and my PWS birthmarks cover 75% of my body. I used to struggle with having them until I was 14. Since then I’ve embraced them. I love standing out, and letting people know I don’t care. My kids friends think I’m awesome. They love coming over and hanging out with me. I joined the Ambassadors to let people know that it is okay to be different.
Growing up with a birthmark wasn’t easy. I was teased a lot, and it made me self-conscious. Over the years, I grew to love my birthmark which plays a big role in becoming an Ambassador. I want to show others who have vascular birthmarks that it’s okay to be different, and to be proud of what makes us unique!
This is Jersie who just turned 5 years old! She was born with a vascular hemangioma on her right shoulder. Although she doesn’t quite understand what is on her shoulder, she does get quite upset when people make rude comments about it. Our hope is to educate people. We welcome positive questions instead of comments like ‘ewe that’s gross,’ or ‘why don’t you just remove it,’ or ‘It’s a shame you’d wear a tank top on her considering it could so easily be covered.’ Our hope for Jersie is that she never feels ashamed or bullied because of her vascular birthmark.
When Gavyn was first born, the pediatrician at the hospital told my husband and me that the redness on his face and head wasn’t bruising from the delivery, but was a Port-Wine Stain Birthmark. She gave us a quick overview but wanted to wait to talk to his normal pediatrician and go from there. That evening we did our own research and learned that every birthmark is individually unique, just like the person who is born with it.
Some birthmarks are small, some are large; some can be dark, some can be light. Depending on where the birthmark is, it can cause other medical issues. One main medical concern with Gavyn’s birthmark, since part of it is over his eye, is that he can develop glaucoma. We see an ophthalmologist every year to be proactive regarding this concern.
Another concern was the psychological effects Gavyn’s birthmark could have on him as he grew older. Would kids bully him because he is different? We didn’t know if he would wear his birthmark as a badge of honor or if it would make him self-conscious. After consulting with a few dermatologists, my husband and I decided that laser treatments to help reduce the redness of Gavyn’s birthmark would be best for him. Four years later, I’m really glad that we made the decision we did.
In March 2016 Gavyn had his first laser treatment. Both my husband and I were nervous wrecks the whole 20 minutes he was having the procedure done. Over the course of the rest of the year, Gavyn underwent five more treatments. Each one was easier than the last, except the final one. He was 18 months old at that point, and I think by then he became more aware of what was going on. We were happy with the results and came to the conclusion that if he wants to have more laser treatments in the future, it would be up to him.
My daughter (Chloe) was born with various venous malformations including a large PWS across her chest and right arm. We’ve done the best we can with our doctors at Primary Children’s Hospital, and Chloe is doing well despite her challenges. After numerous rounds of sclerotherapy, she’s left with microcystic hygromas and other various venous malformations. I’m thrilled to find this foundation and hope to connect with others!
My name is Vanessa and my daughter, Loriana, has a PWS on the right side of her face. Being a first-time mom can be overwhelming on its own, but spending the first sleepless week of my baby’s life researching everything I could about vascular birthmarks made it even more difficult. Thankfully it did not take long to find the VBF and many support groups on Facebook. Every person I communicated with made my PWS journey a little more manageable. While I’m no expert, and still learning more everyday, I would love to give back to the vascular birthmark community in any way I can. I’ve started a Facebook group for families in Ontario and am looking forward to connecting with others in my area.
My name is Vanessa and I was born with a Port Wine Stain birthmark on both legs, my right arm and parts of my torso. Due to being misdiagnosed at birth (my parents were told it would fade over time), I did not start laser treatments until I was six years old. I received over 75 treatments within 6-7 years with only small improvements. After developing skin ulcers (and ultimately had a skin graft) from severe scarring on my shins – I decided to stop all treatment. However, a few years ago, I began laser treatments once again and have seen some great results!
Growing up, I dealt with low self-esteem and so many insecurities. Now, as an adult, I am learning to love my birthmark and have found strength and positivity in my uniqueness. I am so excited to help raise awareness for VBF and vascular birthmarks!
Growing up with a port wine stain was never easy. It was confusing and challenging, as I didn’t quite understand why I was different or why this red patch on my neck and cheek became darker every year and grew in size. I received laser treatments up until I was 10, then stopped treatment for 10 years. My port wine stain became hypertrophic, growing in size on my cheek and thickening. After seeking treatment again, I discovered the VBF and Dr. Gregory Levitin. This discovery and doctor have changed my life. One thing that must be stressed is monitor changes in your PWS and maintenance is so so important.
Growing up with a port wine stain was never easy. It was confusing and challenging, as I didn’t quite understand why I was different or why this red patch on my neck and cheek became darker every year and grew in size. I received laser treatments up until I was 10, then halted treatment for 10 years. My port wine stain became hypertrophic, growing in size on my cheek and thickening. After seeking treatment again, I discovered the VBF and Dr. Gregory Levitin. This discovery and doctor have changed my life. One thing that must be stressed is monitor changes in your PWS and maintenance is so so important.