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
ReMARKABLE You!
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 Liz Stern as our ReMARKable person of the month!
Liz has Klippel-Trenaunay Syndrome (KTS) in her left leg and CMTC or Cutis Marmorata Telangiectatica Congenita. Liz’s journey towards diagnosis was not an easy one. Initially, she was diagnosed with KTS, but as a second opinion, she was diagnosed with Macrocephaly Cutis Marmorata Telangiectatica Congenita (MCMTC). As she got older, however, she did not demonstrate the Macrocephaly symptoms, but rather more just CMTC symptoms.
CMTC is characterized by discolored patches of the skin caused by dilated surface blood vessels. The skin has marbled or “fishnet” appearance.
As a result of her condition, Liz has undergone two surgeries to help with the overgrowth in her left leg from her condition. When she was only a year old, she had a procedure to remove a large bump from the top of her left foot and second toe. Then, at the age of 12 she had to have her left knee growth plate stunted, as her left leg had become longer than her right and the doctors wanted to give her right leg time to grow. Due to her symptoms of swelling and varicose veins in her leg, Liz wears compression stockings, but may in future have to undergo sclerotherapy.
Growing up with her vascular birthmark syndrome has not stopped Liz from doing ReMARKable things! Liz loves writing short films, and recently started college as a film and cinema studies major. Her favorite part of writing screenplays is the fact that she gets to decide what happens to the characters. Liz also really enjoys watching television shows and movies, especially when she can relate to a character onscreen.
When she is not working on her film projects, Liz enjoys taking long walks with her friends and her dog. She enjoys the peace of nature and being outdoors. Liz also joined me on a road trip to Michigan this summer, where we got to participate in the Purple Polka Dot Race, which supports the Vascular Birthmarks Foundation.
If Liz could give a piece of advice that she has learned by growing up with her condition, she would tell others that you don’t owe anyone an explanation of your diagnosis, especially if you don’t feel comfortable explaining it. She believes that people should not be judged based on their physical appearance or disabilities, but rather by their personality.
Liz is truly ReMARKable because she focuses on what makes each person truly unique and always tries to find ways to relate to others! Way to shine Liz, and spread the message of acceptance!
Nominate a ReMARKable person who is proving that they are MORE than a birthMARK!
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