Jennifer K. Clark
It is estimated that 1 in every 10 babies is born with a birthmark or some kind of vascular anomaly, and 3 out of every 1,000 babies are born with a port wine stain birthmark. A vascular birthmark is an area of pigment change in the skin that can be present at birth or develop in infancy. While the most common birthmarks are hemangiomas or port wine stains, there are many other related syndromes that can include vascular birthmarks. Despite their common appearance, very few people know about birthmarks until they have a child who is born with one or meet someone with a birthmark. The lack of awareness about vascular birthmarks can lead to a sense of awe and confusion, and those who grow up affected by these conditions can oftentimes feel different. This is particularly difficult for teens and young adults who may feel as though they have been forced to stand out because of something that they have been born with… something that they cannot control. ReMARKable you! celebrates individuals with vascular birthmarks by showing that while their physical appearance is unique and beautiful, they are so much more than their birthmark. The vascular birthmark community is full of incredible talents, interests and aspirations, and it is important to recognize how truly reMARKable they are!
I am the founder of
As a teen with Klippel-Trenaunay Syndrome, I know firsthand the struggles of living with birthmarks. It can be difficult, especially, when you are a teen. I wanted to do something about that so I created ReMarkable You! ReMARKable you! encourages individuals with vascular birthmarks and related syndromes to not be defined by the mark on their body, but rather by the mark they can make on the world.
I am honored to be an Ambassador for the Vascular Birthmarks Foundation. This is an international charitable organization that networks those affected by a vascular birthmark, anomaly, tumor or syndrome to the appropriate medical professionals for evaluation and treatment. VBF also educates physicians and affected families regarding treatment options, supports relevant research, mobilizes medical missions, and empowers those living with vascular birthmarks.
ReMARKable you! works to advance its mission through the following projects:
ReMARKable Person of the Month ReMARKable you! would like to celebrate Ava Pyles as our ReMARKable person of the month! Ava was born with PHACE syndrome, which is a syndrome defined by having a hemangioma and at least one more of the five characteristics of PHACE:
P – posterior fossa and other structural brain malformations
H – hemangioma of the face, neck or scalp
A – arterial lesions
C – cardiac complications or abnormalities
E – eye problems
Ava has three of the acronyms of PHACE - hemangioma, posterior fossa and eye problems. Ava also has Dandy Walker Syndrome and a Posterior Fossa Cyst in her brain. Throughout her 22 years, Ava has had about 33 laser treatments and 31 surgeries. It has affected her eyesight, hearing and some feeling on the left side of her face. In her younger years, Ava also had problems breathing because her airway was 80% blocked by the growth of her hemangioma.
Despite the symptoms of her condition, Ava has accomplished a so much and is a truly compassionate, supportive and inspiring friend. She currently works at Penn State Milton S. Hershey Medical Center in the patient transport department as an outpatient door aid, and loves helping others. Ava is also on the Leadership Committee for the Vascular Birthmarks Foundation Global Ambassadors, working to organize virtual and in-person meet ups. Her friendly and outgoing nature and willingness to support her friends make her the perfect person to bring others together. Ava loves to run. She ran Cross Country in high school and still runs today with her friends. She also likes to run road races, and averages at least one race every month. She will also never admit it, but she is really fast!
Writing her personal blog, Birthmarks are Beautiful, Ava encourages others with vascular birthmarks and similar conditions to know that they are not alone. By sharing her personal journey, Ava spreads awareness about vascular birthmarks so that she may help others going through similar experiences. Another interesting fact about Ava is that she loves listing to Coldplay every day, and could possibly be their number 1 fan! Coldplay has been Ava’s favorite band since she was 5. Ava is a truly reMARKable person, because she has NEVER allowed growing up with PHACE syndrome to stop her from living her dreams and creating a life of giving to others. Her incredible spirit, beautiful smile and joyful heart shines through and makes this world a better place! Keep on shining Ava!
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