The Vascular Birthmarks Foundation

Dr. Linda Rozell-Shannon, PhD President and Founder

Gina Rothe is the Project Associate for the Vascular Birthmarks Foundation. Click here to read her professional bio.

Life with a vascular birthmark has never really had a beginning or an end for me. My mark has always been just a part of daily life. Until joining the Vascular Birthmarks Foundation (VBF), I thought the mark on my right chest and around the back of my neck was a port-wine stain, but with the help of Dr. Linda and her team of experts I am learning more about myself and my mark, which is a lymphangioma circumscriptum, or microcystic lymphatic malformation.

Growing up, I was fortunate to have been surrounded by an extremely supportive and inquisitive, small-town community and I was able to really focus on my character as a person and be encouraged for my artistic and athletic abilities. I was wholly accepted for who I was, and I thank my parents, friends and extended family for that. The mark has always usually been a conversation that arrived after people got to know me as a person and for my work or art. On occasion strangers will ask if I have a rash, if I had been burned in a fire, or if “everything was OK at home”, but my answer has always been a matter-of-fact: “It’s a birthmark.”

As I entered my 30s, the mark had begun to thicken and darken a bit, and I have occasional dermatological cauterization of the blebs, so they do not bleed. During a short stint as a working print, runway and live plus-size model, I had to cover it with heavy makeup so I could get better gigs and avoid producing “extra work” for clients who would have to photoshop the mark out. Now I am a photographer, so having the mark puts others at ease and enables me to appreciate and capture differences and beauty in all forms. Children have always been the most open asking me what the mark is, and so I have always loved the opportunity to quell any fears and explain that birthmarks come in all shapes, sizes, and colors.

Bearing this mark—with the location of it on my body—has not always been an easy journey, psychologically. I have always been aware of the lack of knowledge by others about vascular birthmarks, including medical professionals, employers, clients, and other peers. I did not realize how much direct-to-professional and direct-to-patient education was still needed, and how much I also had to learn about my own vascular birthmark. There’s so much work to be done to educate on behalf of those living with vascular birthmarks, and so much self-love to be experienced by all.

Anticipating what others are thinking can rent space in one’s mind, but some of the best advice has been to truly “be yourself, because that is why people love you”. Everything seems to fall into place from there. It’s also this same path of least resistance that led me to Dr. Linda and the amazing team at the Vascular Birthmarks Foundation. It is a true blessing to work with the foundation and its mission, which is so deeply ingrained in me.