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
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!
Lauri was born on September 24, 2018! We ended up in the hospital when Lauri was just 6 weeks old & was there for 5 1/2 months. My little girl was born with a very narrow airway which resulted in a trach after 3 different dilations. She has that until further notice but should soon be getting it out! Her Port Wine Stain is a different story as it’s gotten a lot lighter the older she has gotten…although her hemangioma around her mouth is progressing. It doesn’t stop her, she is so full of life! It has been an amazing journey watching her learn & push through whatever she comes her way! She is a true inspiration to myself & everyone she comes in contact with!!
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.
My daughter Alysa was born in October 2017 after a healthy pregnancy and uncomplicated delivery. The doctor thought Alysa had a bruise from her birth but soon after we knew it was not a bruise. Our journey into vascular birthmarks began.
At 1 week old Alysa was diagnosed with a port wine stain. She had her first check of her eyes for signs of glaucoma at 2 weeks old, and we declined an MRI in favor of clinical monitoring for SWS due to the location of her PWS. Alysa’s port wine stain covers her left cheek, ear, and neck. She is monitored regularly for glaucoma and gets laser treatments in Kansas City.
Alysa doesn’t let anything bother her and proudly wears her “special spot” each day. She is a smart, happy, healthy, and silly little girl! I don’t know what we would do without her!
I was born with a PWS on my right cheek. Early on, I had to struggle with the scarce availability of dermatologists managing birthmarks in children. Therefore, it ignited an ever burning passion to pursue medicine and specialize in pediatric dermatology to ensure all children with birthmarks have access to latest information about treatment and management of various vascular malformations and birthmarks.
I was supported by members of VBF social community when I was going through my laser treatment and that is when I decided I will give back to it one day. I am on the first step right now, as I am doing my residency in pediatric and adolescent medicine at Mayo Clinic. Alongside, I want to contribute in promoting the work of VBF so everyone who has a birthmark feels supported and loved.