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 port wine stain on the left side of my face, I have had it since birth and I have had 27 operations in 10 years when I was younger. I’d like to be able to help people understand and be more aware of port wine stains and all birthmarks and I think through this I’d he able to help.
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.
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 son Jackson was born with a port wine stain. His doctors all assured us that the likelihood of him having Sturge-Weber Syndrome was very rare due to the size of the port wine stain. He was diagnosed at 4 months after a cluster of seizures. I now know that size of a port wine stain has nothing to do with brain involvement.
I would like to become an ambassador to help spread awareness and education about PWS, as well as Sturge Weber Syndrome.
My daughter Kennedy was born in 2014 with Kaposiform Hemangioendothelioma, KHE with Kasabach-Merritt syndrome. She was diagnosed correctly at a month old and spent many months in the hospital on steroids and chemotherapy (vincristine). After endless tweaks to her treatment, she was finally stabilized and able to go home. She suffered with extremely low platelet counts and internal hemorrhaging until she was stabilized. Currently she is thriving with little to no medical intervention as we call her KHE dormant. We are well aware of its ability to awaken, which would require her to start treatment again. We have documented her story on Facebook at Kennedy Dailey And The Search For A Cure To KHE.
My daughter Kennedy was born with Kaposiform Hemangioendothelioma, KHE with Kasabach Merritt syndrome in 2014. She was diagnosed correctly at a month old and spent many months in the hospital on steroids and chemotherapy (vincristine). After endless little tweaks to her treatment, she was finally stabilized and able to go home. She suffered with extremely low platelet counts and internal hemorrhaging until she was stabilized. Currently she is thriving with little to no medical intervention as we call her KHE dormant. We are well aware of its ability to awaken which would require her to start treatment again. We have documented her story on Facebook at Kennedy Dailey And The Search For A Cure To KHE.
Hi my name is Chad, I’m 21 and I was born with a port wine stain on the right hand side of my face going up to the top of my head. Up until the age of 6 I had 12 laser surgery’s to reduce the redness/brake up my birthmark. Throughout my childhood I never had any problems because of my birthmark, or if I did they were small that I can’t remember them. I normally forget I have a birthmark unless it catch it in the mirror or someone looks. I don’t have a problem people asking me questions about my birthmark, I’d rather them ask then just stare. You should never be afraid of what people think or say about it, it only matters what you fell inside. I personally don’t think is has held me back, in some ways I think it has helped.
I grew up in the late 70’s and all 80’s with no treatment options and most doctors not knowing what a vascular birthmark or Sturge-Weber Syndrome was, or how to treat it. I was able to have some laser treatments in the early 90’s to help with the skin lumping and swelling. I had about 10 treatments over a 5 year span. My Sturge-Weber Syndrome also has caused glaucoma in right eye and I suffer from seizures. I’m married now with a son and Sturge-Weber Syndrome was not hereditary. Still going strong!
On January 17th, 1992 a little one was born. She was welcomed with love by her family who has always embraced her little “angel kiss”. Growing up with a facial difference in my younger years was quite tough. Not knowing anyone like me and being singled out for being different was the norm. I began covering up and hiding behind caked on layers of make up at the age of eight. I spent eighteen years behind that mask before finally becoming at peace and finding love for my birthmark. Being our truest self and embracing our differences is the most freeing feeling of all.
Fate May have dealt us a different tale, but it’s also a great motivator to conquer. If I let the stares/whispers stop me, I’d never be the inspiration that drives me on those dark days!
