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 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!
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.
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.
Lola was born with a quite visible Kaposiform hemangioendothelioma with Kasabach-Merritt Syndrome. Sadly this was misdiagnosed twice as a hemangioma & a vascular malformation. She is under care at Sheffield Children’s hospital. Currently, she is receiving no treatment for her KHS, but her KMS is treated with steroids & 23 doses (to date) of vincristine. We have Lola Facebook group, which we hope will help support people all over the world. Also, as an Ambassador we are just here offering support.
My name endah of Indonesia. 35 years I received the condition of the with PWS. First, when small I just received a scorn from the shelter me. Just support my father and my mother, as well as a large family I made my able to stand up until today. I am proud and still grateful to God with PWS it because I think not everyone can be like me. This is a gift of of God. To prove I could and able to be more of them all the perfect, I choose the determination migrated to the capital. Here I found the back of the people who think up and accept all advantages and lack of me. And I could share of with pupils me. Being a teacher is the choice of my life.
My name is Eric, I was born with a PWS. Growing up I faced bullies, depression, fear, and insecurities – but that all changed with time. Once I accepted who I was the rest was history. I used those hard times to become who I am today. Today I use music to help spread my message of strength, love and confidence. I am dedicated to my community by providing school supplies to the youth and winter wear to the homeless. My hand is always out to anyone who needs it! I run a social media page “Port Wine & Proud” supports you!
Martin was born with faint, pink marks that we were told were due to birth and would fade. They didn’t fade; they got brighter and darker and became raised, it covered his back, half of his chest, full arm and side of his head. He was misdiagnosed and when his skin started to open with sores we took him to the ER where many tests were done and in a couple of days was diagnosed with PHACE Syndrome. He was two months old, we were terrified, something we were told would not be any harm was actually internally affecting him and was potentially life threatening as they were unsure he was getting enough blood supply with the narrowing of his arteries. He started taking propranolol to fade the hemangioma and we became experts at bandaging our months old baby so his sores would close and not become infected. His few physical delays didn’t stop him as he is now a four-nado who loves to run, play and sing. He is no longer on propranolol but is on a daily aspirin as a blood thinner for his narrowed arteries and he is still at risk of stroke. He will continue to have many annual tests done and our journey continues as he starts school this year. We are truly blessed to have him and we adore his beautiful PHACE and soul.
First time mom never knew or heard of vascual birthmarks until she was born. Already scared enough of the delivery process had to to have a c section then having my daughter be deliverd and not being able to see her for more than 10 seconds, as they took her down to NICU for what they said was some sort of a possible rash. it was all very scary amd emotional and i would love to help out other new moms and eveeyone else out there that doent know what a vascular bm is!
I’m 21, and live in North Wales. I was born with the Portwine Stain on the left side of my body. Since I was a baby I have had numerous of laser therapy sessions in Alder Hey Children Hospital in Liverpool which helped to fade out the birthmark until I was 18, then I was transferred to Whiston Hospital in Prescot, and then to St Helens Hospital which I now attend every three months. I’m happy with the progress, even though I know the Portwine Stain will never dissapear.