VBF Global Ambassadors are a global network of advocates who are working together with VBF to build awareness of vascular birthmarks and funnel support to every corner of the birthmarks community. In most cases, these are not medical professionals. However, many are either themselves 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 story.
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 you identify a Parent or Adult Reps who has volunteered to provide personal support to other patients and families based on their own unique experiences.
To become a VBF Global Ambassador follow this link to register now or contact Scott Cupples, manager of the VBF Global Ambassador Program.
I am Batool Kaushal from India. I have lived 54 years of life handling bleeding and pain due to Arteriovenous Malformation of my Pelvis, right leg and foot. I had four surgeries before attaining the age of four. Doctors presumed it to be rectal piles and the bleeding did not stop, till I was operated for pelvic hemangiomas at the age of 18. Eight hour long surgery stopped my profuse bleeding but my leg and foot AVM continued to give me severe pain, till I found Vascular Birthmark Foundation online and approached Dr. Linda, who arranged my leg surgery at Lenox hill hospital in NYC, in 2014. I continue to get advice from AVM team of VBF. I wish to support and help children and adults with Birthmarks in India and around the globe, so that patients like me do not suffer due to lack of awareness and medical aid anywhere in India and abroad.
I am Rafaela, 36 years old, and was born with port wine stain. I’ve never been treated before because, and I am proud of my birthmark. Even though I was bullied as a child, I never had low self-esteem. I have a wonderful family which always support me. Now I am yoga instructor and they call me “the beautifully marked yoga instructor”. I am here to provide support and awareness to others who have the same beautiful mark, especially in Singapore and southeast Asia. Thank you VBF, I’m proud be a Global Ambassador!
My Daughter was correctly diagnosed with a VM at the age of 10. It is intramuscular as well in fatty tissue. She has had sclerotherapy twice so far. The blood clots that she has from her VM are very painful especially from puberty and extraneous exercise. Her VM is located on her gluteus and is almost covering the whole right side of her buttocks. It’s very lumpy and hot to the touch all the time. She has a hard time dealing with the stares that other people give her, even though it is covered in clothing. It’s hard as a mother to see my child worry about what people say and the stares, it’s even harder to know that she is constantly in pain and I can’t do anything to help ( she hates taking pain killers, so she just deals with the pain).
When my son Jeremy was born the doctors immediately noticed that he had a slight drooping on the left side of his face. As a result, he was misdiagnosed and it was only after several different visits to doctors that we found that he had a venous malformation. He’s had several treatments and is now 14 years old and going into high school and thriving.
My name is Gabrielle, or “Gabby”. I have an untreated port wine stain covering my right arm and hand. I’m also a sucker for humor, so my favorite thing about my PWS has to be the irony of it. I’ll go days at a time without even thinking about my birthmark. I’ll notice it on my hand when I reach for something, and it’s completely casual. When I describe myself, my birthmark doesn’t come to mind. But there isn’t a day that goes by where others don’t notice it. When others describe me, it’s probably the first thing that comes to mind. I mean, they don’t call me “the girl with the thing on her arm” because I have a great smile.
How funny is that? What makes me stand out to others doesn’t stand out to me, and that is why VBF is important to me. I want to raise awareness and help support other children and teens living with a vascular birthmark, because I hope that one day my birthmark isn’t ironic. Of course, then I’ll have to find a new favorite thing about my port wine stain.
Our daughter was born with Port Wine Stains covering half of her face and back. With little knowledge of what Port Wine Stains were, we never expected a birthmark would present with so many health concerns. She was also diagnosed with Sturge-Weber Type II. My goal is to educate those around Rockford, Illinois area, as well as to provide support to parents and families also experiencing similar situation.
Evelyn Grace, our 19-month-old daughter was born at 34 weeks due to preeclampsia. She came into this world with a fight and a 17 day stay in the NICU at Overland Park Regional in Overland Park, KS. Evelyn’s doctor was sure it was just brushing from her traumatic birth. A few days later, her father and I were told the news that it was a Port Wine Stain birthmark. We were shocked, as we had never heard of a such thing before that moment. Evelyn was soon tested for Sturge-Weber Syndrome and possibly blindness in her left eye and waiting on the results seemed like forever. Thankfully enough, Evelyn was cleared of any further complications. Days went by, we left the NICU and was referred to a Dermatologist to talk about laser option, this was intimidating. Her Dermatologist recommended 4-6 treatments for her PWS to fade over the next few years. Here we are 5 treatments in and still have little to no fading on Evelyn’s cheek. We get looks, questions and comments while in public, which eat away at me considering Evelyn has no idea what is being said and just can’t help but smile back. We have learned to ignore the comments and just remember how special she truly is. We will continue our journey with treatments.
I am born in New Delhi, India. For few years I was not even aware that the red spot on my face was a birthmark, and neither were my parents. The doctor told my parents that It will vanish over time but it did not. In India, it is not very common to have a vascular birthmark so I have spent whole my life explaining people that was not the result of an accident, but something I am born with. There are no treatments available here for these birthmarks, so most of us are just living with it. I found one clinic in Delhi which has pulse dye laser and it’s been a year since I’ve started treatment. I have realized after starting the treatment that we should accept ourselves and I want to embrace my mark. It took me a lot of effort to find my inner peace!
I’m Lucy, I’m 15, and I have a port wine stain, Klippel-Trenaunay Syndrome and hemihyperplasia. One side of my body grows faster than the other, I have weak muscles, bones and immune system and I’ve had over 40 surgeries since I was 10 months old. I’m a dancer and don’t let my conditions stop me from doing anything.
Hello! My name is Shelby & I am the mother of Fallon! Fallon was born with an infantile hemangioma – which is why she has the nickname “Strawberry Shortcake!”. No one in our family has ever had a hemangioma (that we know of!) and we were unsure of what is was and how to care for it. After speaking with her specialist at a children’s hospital we found out some amazing facts about hemangiomas! Now, we spread awareness around our community and have made new friends that have or have children with hemangiomas! We carry pamphlets of information & hand them out to those who stare or ask questions! We love teaching about them!