In the 6th segment of our TRUTH SERIES we will be hearing from numerous strong and resilient men and women who will each share their own powerful stories in tackling a life changing battle head on & their journey on how day to day life has been for them ever since. I pray this segment empowers many people who come across it and that it also gives strength & courage to those facing the same or a similar obstacle at present.
“My intentions for all various segments of the TRUTH series is to educate others who may not be aware of such issues, whether it’s because it has never been a challenge they themselves have faced, to educate those whom are aware but choose to ignore the issue/s and lastly to help encourage others in being brave in speaking out. As we know, knowledge is key.” – Natasha
I would like to introduce you to our 3rd special Guest for this segment, Carolina. Carolina is a 22-year-old Health Science student who resides in New Zealand. Carolina was born with a port-wine stain birthmark on the left side of her face and upper body. She also lives with Klippel-Trenaunay Syndrome (KTS) and Sturge-Weber Syndrome (SWS). Below is her powerful story.
My name is Carolina V. I live with a facial difference—a port-wine stain (PWS) birthmark on the left side of my face and upper body. The abbreviation PWS stands for the term "port-wine stain" (nevus flammeus or a fire-mark). In layman's terms, a PWS can simply be referred to as a birthmark. It is known as a capillary vascular malformation, which basically means the blood vessels beneath the skin (e.g., the lips) do not develop properly. It results in the vessels becoming enlarged, and this causes a visible discoloration on the skin's surface.
At birth, I had a light, red-looking birthmark. As I began to age, my birthmark darkened (dark red or reddish-purple) and also grew larger. To this day, it continues to grow. I was born with this on the left side of my face, shoulder, arm, hand, and chest. It extends to sections of the neck, back, and chest. It also appears inside the roof of my mouth (only on the left side), my lips, tongue, gums, and left cheek. It has not spread down to my lower abdomen, legs, or feet, though. My birthmark is associated with two disorders: Klippel-Trénaunay syndrome (KTS) and Sturge-Weber syndrome (SWS).
KTS is defined as a rare condition that is discovered at birth. It causes blood capillaries or vessels, bones, and soft tissues to develop incorrectly. It is characterised by three main signs: the presence of a capillary vascular malformation (a PWS birthmark), malformations in lymphatic or vein development, i.e., varicose veins, and an overgrowth in bones and soft tissues. The affected limb may feel heavy, cause pain, and be difficult to move at times.
Similar to KTS, SWS is also a congenital disorder, meaning babies born with a birthmark on their face will most likely be born with this syndrome too. This neurological condition impacts the eyes, skin, and nervous system. Individuals may also experience seizures, developmental delays, and intellectual disabilities (all of which I have experienced).
Unfortunately for me, I live with both syndromes, both of which I have undergone medical treatment for. As early as 8 years old, I was granted the chance to have laser therapy performed on my PWS birthmark. Each surgery was performed under general anaesthesia (with inhalational gases) because I feared needles, especially while I was still awake. From my recollection, I had my first one at the age of 8 years old and my last one at 19 years old. I decided not to continue with the treatments anymore as they were causing me so much pain, both during and after them. I also did not want to commit to this for the rest of my adult life. Although it has lightened my birthmark a bit, I have accepted the fact that a birthmark as dark and as large as mine will never entirely fade.
I never had the opportunity to attend kindergarten or preschool. This would have been my first interaction with people who were not relatives of mine. Instead, I spent the first 4 years of my life at home and occasionally with close relatives, so I had no previous experience with school or forming meaningful interpersonal interactions and relationships. When I turned 5 years old, my parents enrolled me straight into a primary (elementary) school in our vicinity.
My parents did not want to leave me in the hands and care of complete strangers. As you can imagine, I only knew my parents, siblings, and close relatives because I saw them as familiar faces, so adding random strangers into the mix was bound to be a disaster. I would also be placed in a foreign environment with other children (younger and older than I) who have never been exposed to or met someone like me before. Because of my birthmark, this left me more susceptible to being bullied, alienated, and/or neglected.
As I reminisce on this specific event, I now understand why they decided to keep me home for the first 4 years of my life. On the positive side, they saved a lot of money, and I could basically do whatever I wanted without kindergarten teachers instructing me what to do. In my opinion, I did alright without attending kindergarten or preschool. I learned as I started school about forming meaningful relationships and having meaningful interactions with others. It did take me a few years to develop this life skill, though. I often find myself pondering what it would have been like for me if I had attended kindergarten and preschool.
Due to a lack of interpersonal relationships with other children, I mentally constructed walls around myself from a young age, much like our immune systems have three lines of defence. When it came to finding friends or acquaintances, I was quite selective. Some may even describe me as snobbish. However, that was my way of filtering out the fake friends from the true and genuine ones.
At an early age, my Mum taught me a valuable lesson about not feeling sorry for myself. She mentioned that it would lead me nowhere in life. I followed her advice and wasted no time in becoming mentally strong. When I was a child, there were rare occasions where I felt self-pity, but this wouldn't last long because I would remember her words. My Dad, however, educated me on similar values, such as remaining strong in the face of adversity. Alongside this, he would often remind me to work hard, if not harder, at everything I did. My parents are my role models, and I aspire to be more like them each day.
I encountered many strangers whom I have had the privilege of calling my friends. Some of them are still friends with me today. My friends have supported me by being present in my times of need, like when I was bullied. They also documented class notes on days when I was absent and never left me alone or rejected me. Every day, I am thankful to have such loving family members and friends who have accepted me for who I am.
I do not recall receiving online abuse, but I have received many negative comments in person, especially while I was still in school. I have been the victim of physical, verbal, and social bullying at the hands of my own classmates. It went on for a couple of months before my parents became involved.
In year 5 (fourth grade), I was bullied by four boys, whom I shall not name for obvious reasons. As with any clique, there’s always a ringleader or the main instigator who ignites the flame and commands the rest of its members to do something. In my case, that something was to cause me as much harm as possible with their comments and actions. One boy, whom I will refer to as Jackson, was relentless in his efforts to taunt me for several weeks, and this gradually progressed to months. He would do this whenever an opportunity presented itself. I tried so hard to avoid them, but it was hard because we were all in the same class.
As I have previously mentioned, my PWS birthmark spreads to the soft tissues in my lips. Due to this, it appears to be larger than normal. From a distance, some would confuse it as being my tongue, and this is what Jackson believed. Whenever I looked his way, sometimes directly at him, he would almost always say to me, "Why are you poking your tongue at me?" or "Stop poking your tongue at me." I could not help it, and I did not have the confidence to defend myself. I was defenceless, and the only thing I could do was cry. Several years after this incident occurred, I had lip and cheek reduction surgery to decrease its size. This surgery completely changed me for the better, and it certainly was a confidence booster.
I spent a large portion of my life being embarrassed by my PWS birthmark. I was also extremely self-conscious and fearful of what strangers would say about it. It worsened when I was among crowds of people, like in queues, but as early as 2019, I decided to embrace it. Just last year, I decided to start my own Instagram account (@facethecrowds) to raise awareness and educate people all over the world about this condition.