No one knew what was wrong. For years, doctor after doctor had thrown their hands up in defeat. They had never encountered such a mysterious condition in all their years of experience. Finally, after years of suffering a private battle that had left her physically and emotionally scarred, she found one doctor who said the words she had longed to hear her entire life: “I can help you.”
Little did she know that the surgeries that would ensue would lead to even more medical complications.
Berlange Presilus was born in Haiti and had a pretty normal childhood. As a baby, her parents noticed that she crawled and walked in an unusual way and had some discolouration on her right leg, but they weren’t alarmed and chalked it up to a birthmark and their baby just being different.
“Doctors told them it was normal and not to worry about it,” Presilus told The Weight She Carries. “They noticed that my right side was higher than my left side – that was a red flag. But again, I was born in Haiti and at that time – probably even now – there wasn’t a doctor who knew about this kind of syndrome.”
At the age of 12, Presilus and her family moved to Florida, USA, and that’s when things began to change for the worse as her pain intensified, and more and more people began to notice her leg. What was once a patch of discolouration had now spread to most of her leg, and she had clusters of swollen and twisted varicose veins.
The physical pain was tough to deal with, but the emotional pain was unbearable because of the way other people made her feel.
“I would get teased, looked at, talked about and bullied for my differences,” Presilus recalled. “So, at that point it wasn’t really about the physical pain because I always said, ‘I wish I only had the physical pain so that way I would suffer in silence and no one would really notice.’”
“My parents would tell me that I was beautiful, but I never saw what they were seeing in me. So, I wanted it all to be over.” – Berlange Presilus
What Presilus couldn’t hide was the huge lump of intertwined veins on her inner leg.
“Even if I tried to cover it up, it was obvious,” she said. “If I wore stockings or tights, people would still notice.”
Complicating things further was the fact that Presilus didn’t speak much English when she first began school in Florida.
“All I knew was that the kids at school made me feel miserable, so that’s when I began to hide my flaws in terms of what I wore,” she said. “No matter how hot it was, I would always wear jeans or long skirts – creating ways for me not to be talked about because I didn’t know how to deal with it. It was very hurtful.”
She turned to all kinds of specialists for answers, but no one had any. They had no idea what her condition was, or what caused her leg to break into skin ulcers, bleed and get infected.
“My life consisted of a little bit of schooling – because I was out of school so many times due to my pain – church and doctors,” Presilus said. “I saw dermatologists and vein specialists and surgeons, and got a whole bunch of referrals just to turn around and get the same results: ‘We cannot help you; we’ve never seen something like this. You’re too young to have all this vein malformation.’ And that only made me feel worse. You can only imagine, I was already at my worst and the people I believe in to help me are telling me this.”
That was a particularly dark period in Presilus’ life, and she became suicidal.
Those around her were unaware of the depth of her pain because of her bubbly personality. By day she was fun, outgoing and took on everyone else’s burden; but alone at night, she would cry herself to sleep. There were days when her pain was so unbearable she couldn’t even bear to look outside.
“Why me? Why am I like this?” she recalls continuously asking herself. “And, of course, that made me hate myself more because I felt like it was my fault. There was no one else to blame – my mom was not like that, my brothers were not like that, there’s no record of anyone else in my family that had this syndrome.”
In an act of desperation, Presilus planned to take her life, but her mother intervened and reminded her of what the repercussions of such a decision would be.
Presilus found a way to continue to push through what seemed to be an impossible situation.
“Looking back now I can see that I had strength, but back then I didn’t realize that I had any strength. For me, it was a matter of surviving.” – Berlange Presilus
“Now, I can say my strength came from God, but at the time I didn’t think I had any,” she said.
Buried beneath her immense pain was her undeniable passion for fashion and modelling, and a dream she held close to her heart.
“Modelling is something that…even in Haiti I would go through magazines and I would see these beautiful models, and nobody really looked like me,” Presilus said. “They were all Caucasian, but I was still inspired because I felt like I had what it takes. Somehow, I believed I could be the change.”
Even more striking than the models were the beautiful clothing they wore. She envisioned herself on the cover of magazines, but never pursued modeling in Haiti due to the lack of opportunities. But once she moved to the U.S., Presilus began exploring the possibility.
She became heavily involved in the fashion shows and fashion classes her high school in Florida offered. Then, one day, when she was 15, someone who owned a boutique asked Presilus if she wanted to work for them.
“From there, I started doing it more, taking pictures…and that’s how it all began,” Presilus said. “But it was always an issue with my leg. I always hid it. No matter how much I was going to get paid to do a show where I would have to show my leg, I would find an excuse. I would say I was sick just because I didn’t want to own that aspect of my life, or my truth.”
Finally, when she was 17, Presilus found a doctor who said he didn’t know what her condition was, but said he could help remove all the superficial veins that caused the lump on her leg.
It was the glimmer of hope she had prayed for.
“All I heard was, ‘I can help you.’ So, I thought everything was going to be perfect when I woke up from surgery,” Presilus said. “I bought new clothes because I thought both of my legs would finally look the same. But that did not happen. And after the (two) surgeries, I had even more complications.”
She began to have blood clots and would bleed internally, and then get cramps. Her condition became so grave she had to see another doctor to address all the complications she was now experiencing. No one could have prepared Presilus for the words that came out of that doctor’s mouth.
“You’re having all these complications,” he said. “You’re having heart failure and your syndrome, whatever it is, is very difficult. So, you are not going to make it past the age of 19.”
The suicidal thoughts Presilus had tucked away came rushing back to the surface as she grappled with this new reality. All she could think of was how this was proof that living was pointless. After all, she would be dead in two years.
“That was the last thing I needed to hear,” she said. “I thought, ‘Why not just take yourself out because you’re going to die at 19 anyway.’”
Somehow, Presilus found the strength to keep fighting and her family refused to give up. Just before she turned 19, Presilus and her family moved to Canada to seek medical treatment.
“Someone told me that Canada had great doctors, so when I moved here, I thought that it was a new beginning for me,” Presilus said. “I thought I was going to get help, and perhaps, I wasn’t going to die at 19. Little did I know that it was all a facade. It was the same thing all over again.”
On her 19th birthday, Presilus was excited because she was still alive, but the level of pain in her body was unimaginable. She had migraines, open wounds, skin ulcers – which made for many sleepless nights.
“I’ve gone through the most terrible experience in my life and just to be here, right now…all I can say is ‘Wow.’ We as humans have more strength than we can ever imagine.” – Berlange Presilus
Eventually, someone told her parents about how great the doctors are in Cuba. There was nothing to lose at this point, so they decided to give it a chance.
After 19 years of searching desperately for a name to attach to this condition that no one else knew about, Presilus finally got her answer. She had Klippel Trenaunay Syndrome (KTS).
KTS is a rare disorder that affects the development of skin, muscles and bones. Characteristics of this syndrome include a port-wine stain (birthmark), abnormal overgrowth of soft tissue and bones, vein malformations and chronic pain.
“I was excited, I was relieved, but at the same time I was so sad because there is no cure for it,” Presilus said. “But still, I was so excited because now I knew what it was, and I could do research to see if there was anybody out there that was like me!”
Her research revealed that although KTS is rare – only 1 out of 100,000 people are affected by the syndrome – there were others going through what she was experiencing. Equipped with this knowledge, Presilus had to decide what she would do with this information.
It was then that she realized that it was time to muster up all her strength and be bold enough to live out her truth.
“That was something that was hard for me because I didn’t know how to do that,” Presilus said. “And it took me a while to actually get to that point. I did a lot of reading, praying and soul searching. I wanted to use my voice.”
When she began to get clarity on what her purpose was, fear set in and crippled her. She kept praying and asking God to carry out her purpose for her but sensed He was telling her that He had already done His part, and now it was time for her to do hers.
“I thought, ‘Oh, no. I’m not doing this.’ So, I kept running away from God,” she said. “And the more I kept running, the emptier I felt.”
Though she was signed to a modelling agency, there were many opportunities she had missed because of her syndrome. Presilus dug deep and began to draw strength from all the physical and emotional pain she had been through.
Slowly, her confidence began to build, and she found the courage to begin sharing her story.
“It’s still hard, it’s still very difficult at times because sometimes I still fight myself because I don’t feel good all the time,” Presilus said.
Now, Presilus is using her public platform to speak out, and is doing all she can to raise awareness of KTS. She has come to embrace her differences and flaws, and travels to speak to groups of people to encourage them to do the same.
“There is a ‘Must’ over all of our lives. So, I knew that if I was still alive then my ‘Must’ hadn’t happened yet.” – Berlange Presilus
The lessons she has earned along the way have been invaluable. What has surprised her the most is how many people are being touched by her story, and how she is being used as a vessel to encourage others.
“I’d say to anyone out there…you are your own magic! There’s only one you,” she said. “The fact that there is no one out there who looks like you, or who can do anything like you do…that’s your magic. And whether you know it or not, everything you need is already inside you.”
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Berlange Presilus is a Jobst ambassador and the model on the Samsung Galaxy S5 commercial, Babies “R” Us, Johnny Walker commercial, Mac cosmetics, Toronto Fashion week and other international shows. She has also modeled for several TV shows such as: The Social, The Marilyn Dennis, The Shopping Channel and others. In addition, her work has been featured in BET shows, and she has been the face of Marriott Billboards (including one in Time Square, NYC).
She is also a motivational speaker and travels the world to share her story. To learn more about her story and her “Be-Revealed” Movement, which includes a line of T-shirts, contact her on her social media platforms below:
Facebook: https://www.facebook.com/kreyolgodess
Instagram: https://www.instagram.com/bellenge/
YouTube: https://www.youtube.com/BReavealed
Website: https://www.bellenge.com/
To learn more about KTS, please follow the link below:
https://k-t.org/about-kt/what-is-kts
Vimbai E. is a content marketer, ghostwriter, and the founder of The Weight She Carries. With hundreds of articles and stories publishing online, in print and for broadcast, her love of language and storytelling shines through every piece of writing that bears her name.