Beyond Standards: See How This Model Defies Beauty Standards With A Rare Medical Condition

 The modeling world is known to be one full of rejection based on aethetics.  Add to that a rare condition that causes discoloration of the skin and chronic pain.  This is part of Berlange Presilus’ story.  The Toronto based Haiti-born model was born with a rare syndrome called Klippel Trenaunay, which has caused pain, discoloration, and other symptoms to her leg.  Yet, despite this challenge Presilus is creating the kind of modeling resume that most newcomers crave.  She’s been featured in commercials for Samasung Galaxy S5, Babies R Us, Johnny Walker, MAC cosmetics, and she’s modeled during Toronto Fashion week and other international shows.

I spoke to Presilus to find out how she’s been able to rise above the physical and emotional pain brought on by her condition to push towards making her dreams a reality, all while reclaiming her beauty.

 

Berlange, tell us a bit about your condition, KTS.

My condition is called Klippel Trenaunay (KTS in short) is a rare syndrome/condition that affects the development of blood vessels, soft tissues and bones. This disorder has three different characteristics; a red birthmark called port-wine stain, vein malformation which affects the limb, abnormal overgrowth of soft tissues and bones. Only 1 out of 100,000 people are affected by it.  I got diagnosed at the age of 19.

What has been the hardest part of having KTS?

At first I thought my leg being deformed; having scars and the port wine stain discoloration was the hardest part of having this syndrome. I guess it’s because I was able to hide my pain and cry in silence. However, being at peace with who I am, no longer afraid and owning it, I’d say the chronic pain. It’s no joke! The pain can be utterly horrific that I beg Jesus to take me instantly.

What has been most inspiring about having KTS?

Knowing what I know now, which is; no one is me and that’s my magic.  I’d say, the different beauty found in me that I am now able to use in order to be someone’s courage is the most inspiring about having this disease.

You’re a model now.  It’s no secret that the modeling world can be quite brutal when it comes to aesthetic and even race.  What was it like breaking into the industry as a KTS survivor/warrior?

This question always gets me! Like most girls, I wasn’t so lucky to break into modeling. There was never a time from what I can remember I consider a breakthrough.  However, It has been very difficult being that I am a model of color and suffers from this syndrome. Denial, rejection and belittling has been an everyday event. Nonetheless, I have no worries. I accept that it’s all part of the journey and I am determined to inspire the masses.

What advice would you give women who want to break through any fear they may have of showing up in the world or pursuing their dreams despite any challenges they are may be faced with?

The advice that I would like give to young girls, young man, woman, man and even to my younger self is to just be YOU. Be unstoppable, worthy, strong and courageous.
Look fear in the eye and be an embodiment of change. Laugh with the world but louder because then the negativities will not get through you. It’s ok to be vulnerable because it’s always for a greater purpose. Nevertheless, walk with confidence and stay true to who you are. We all have genius in us and we are ENOUGH.

Abi Ishola
Abi Ishola

Editor-in-Chief

Abi Ishola is the Founder and Editor-in-Chief of Beyond Classically Beautiful, the acclaimed photo series turned multimedia platform. On any given day, you can find her tucked away in a perfectly lit Brooklyn coffee shop working for several hours. Then she dashes off to pick up her daughter from daycare. Abi is also a TV Producer, a proud FIT Alum, Nigerian-American, and a soul searcher.

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