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
¡Hola! Soy Doris, maestra, madre y abuela. Vivir con un enorme lunar rojo en medio de la cara no siempre es fácil, especialmente cuando hay algunas personas que suelen ser crueles con sus comentarios. Las almas más nobles suelen ser los niños, simplemente preguntan qué te pasó, dicen OK y siguen jugando☺. Uno aprende a ignorar y seguir. Una vez alguien me preguntó que cómo yo me atrevía a dar clases con eso en la cara😳… Aprender a lidiar con ignorantes es un arte.
Hello! I’m Doris, a teacher, mother and grandmother. Living with a huge red mark on the middle of your face isn’t always easy, especially when there are some people who are cruel with their comments. The noblest souls are usually children, they just ask what happened to you, say OK and keep playing. You learn to ignore the negative comments. Someone once asked me how I dared to teach with that on my face😳… Learning to deal with ignorance, is an art.
My name is Dorothea but I have gone by my middle name “Nikki” my entire life. I am 47 years old and I was born with a port wine stain and have undergone argon laser treatment several times starting when I was around 14 years old for a few years. In my mid 40’s I notice my face started to look larger then the non birthmark side so I went back to the dermatologist here in my city and for the first time had tests done and found that my birthmark is very deep and goes all the way into my chest cavity and this is why after all the laser treatments I received I never saw much change. I know this is how I was made and I accept it, I may look a little different but I always try to be kind, friendly to everyone and sometimes I even forget I have a birthmark. My friends and family tell me they don’t even see it anymore. I have been married to my husband for 26 years and we have 4 beautiful children.
Edie was born with a port wine stain on her lower extremity. In 2008, it was challenging to receive a proper diagnosis and she was consistently misdiagnosed until we found a team of doctors through the Vascular Birthmark Foundation. We are so grateful to be a part of the community at VBF and finally have an international team of experts to treat and monitor her condition. Edie wrote a book titled My Beautiful Birthmark to raise funds for VBF for families to get proper diagnosis for their children. She is also the star of a new short film where her birthmark is exposed and not covered for the first time.
Life has been very difficult growing up with a birthmark. Don’t think I could choose just one story. When I was in first grade a bunch of girls pulled me off the front steps of my class room and beat me up. When I was in 4th grade these guys beat up my 1 friend for being my friend. All through elementary to high-school being called 2 face. The 1 I remember most I was in my 20s riding the bus and some guy said to me. Did someone slap you across the face and sit on your head?
I was just blown away one how ignorant people are. You grow up and realize all the things your parents had to go through as well. I all have seizures witch made it even harder because they were very bad when I was young. Glaucoma in my right eye. With all these things going on your dealing with the bullying how different you are from all the other kids. You have all the doctors and you want to rebel not take your medication because you can control that so I think its really important to support and education children so that doesn’t happen.
I have a PWS on both sides of my face, my neck, my right arm and right chest. There have been times I’ve hated my PWS and I’ve been very depressed over having it; usually when I get the inevitable, “what’s wrong with your face?” comment. I wore make up to cover it as a teen. Now I just don’t care, I am who I am, and I live by the phrase, “the people who matter don’t mind and the people who mind don’t matter.” I started treatments at 6 years old with just topical numbing cream. I had to stop for a while because my PWS is large and treatment was too painful. When I was 9 years old, we found a doctor who treated children under general anesthesia, it made treatment so much easier. I now work as a dermatology nurse and get be a part of other people’s treatment journeys, which I absolutely love!
My name is Elizabeth, and my daughter, Hanalay, was born with a port wine stain in 2016. I’d never heard of vascular birthmarks prior to her diagnosis, but we’ve learned a lot since then! We’re eager to share our experiences to help ease the road ahead for others facing similar situations. So far, Hanalay has undergone 13 laser treatments on her birthmark under anesthesia. Otherwise, she is a happy, healthy two-year-old who loves meeting new people, playing dress up, and eating ice cream! We try to keep track of our birthmark-related adventures in a blog as well. Feel free to check it out at: https://birthmarkstogether.wordpress.com/
I was born with a port wine stain covering the right half side of my face. My family tried to find any treatment they could for me, but we were unsuccessful, and the lesion was getting worse and worse every day. At age 28 my face became horribly disfigured and was still left untreated, until I miraculously found Doctor Milton Waner who saved my face and changed my whole life.
Hi! My name is Emelie and I am a 20 year old university student from Germany.
My birthmark (port-wine stain) is located on my left temple, so it’s very visible.
I want to focus on my journey on becoming a young woman that is proud of her birthmark. Growing up I never felt the need to cover up my port-wine stain. I only started thinking about covering it as more and more people drew attention to it. School was when I truly realized that I look different.
Questions like “Did you ever think of covering it up?” or “Would you remove it if you could?” and all the stares in public put doubts in my mind about my appearance I never had before as a child. It took a lot of time and work to now being able to say that I am proud to have my birthmark, I love who I am and I wouldn’t change a thing. But those comments from the outside world and especially being exposed to social media as an early teen sparked a lot of negative thoughts in me. However I eventually got over those doubts, I think it was a combination of embracing who I am. and starting to like that I was a little different. Don’t get me wrong, I do still get uncomfortable when I am out it public and notice people staring at me but I don’t let that affect me anymore. To me beauty is about being comfortable in your own skin, it’s about loving and accepting who you are. And I believe with the right mindset everyone can find the beauty in themselves.
That is why I want to spread awareness on this subject, so that young girls and boys who may hear the thinks I heard growing up won’t have to struggle with their self-image, because they know they are not alone. I want them to feel good about themselves and focus on things that are more important than worrying about their appearance. And whether or not you choose to cover up your birthmark, it’s about feeling comfortable in your skin and I wish that more people would.
Hi my name is Emma and I am 17 years old. I was born with a venous malformation of my left leg as well as KTS that spans from my toes all the way up to upper thigh and hip. However, my condition has become more complex over the years as I have developed a flexion contracture in my left knee which has left me wheelchair-bound for long distances, in addition to blood clotting issues that have led to me giving myself blood thinning shots twice a day.
Over the years I have had upwards of 30 sclerotherapy treatments with Dr. Rosen, a debulking surgery with Dr. Waner, and regular check-in appointments with Dr. Blei as well. Despite all the time my treatments take up, I don’t let that stop me from pursuing my passions and staying active. I am an avid athlete both in school where I am soon to be a captain of the varsity track team and out of school where I am apart of the New York Road Runners Youth Wheelchair Training Program.
Not only do I participate in NYRR programs, I am also a youth ambassador alumni and I have served as a Grand Marshal for the 2017 TCS NYC Marathon. Aside from wheelchair racing, I am also a mentor for a non-profit called Stay-Focused which certifies teens with disabilities in scuba diving. I am involved with various clubs and initiatives at my school, specifically ones related to mental health and advocacy.
Without my vascular malformation, I never would have been immersed in the amazing culture and family of the Vascular Birthmarks Foundation, or been provided with many of the opportunities I have had throughout my lifetime. I never would have attended the VBF Conference where I met several lifelong friends who I consider to be my “KT Sisters”, so for that, I am forever grateful. Thank you VBF for all you have done for me and all you continue to do for people living with vascular birthmarks, malformations, and anomalies.
Lola was born with a quiet visable Kasposiform hemagioendothelioma with Kasabach merritt. Sadly this was misdiagnoised twice as a hemangioma & and vascular malformation. She is under sheffield childrens hospital & great ormand street. Currently on no treatment but treated kms with steriods & 23 doses of vincristine. We have lola facebook group, which we help support & try get advice for people all over the world to help. Also just offering support.