Some rare diseases don’t just inflict pain on their victims.
Unfortunately, those who suffer from unusual conditions sometimes also have to put up with looks and comments that others make just because they don’t “look like everyone else.”
So it’s important that to learn more about rare diseases and the people living with them so we can increase our understanding and awareness.
One way to do this is to highlight role models who dare to speak openly about their lives—even though they don’t belong to the norm.
Isa-Bella Leclair was born with Parkes Weber Syndrome, a genetic disease that, among other things, results in lymphedema, or a swelling in one of the legs.
Fluid started collecting in Isa-Bella’s right leg when she was very young.
Over time, her right leg swelled to twice the size of her left one.
“I literally realized something was wrong with her body the moment she was born,” Isa-Bella’s mother says.
By the time Isa-Bella Leclair was at university, her right leg weighed 40 pounds (18 kg).
Physical activity was virtually impossible. Finding a pair of jeans that fit was out of the question.
And since Isa-bella’s right leg has always drawn attention, she often received questions and had awkward glances.
“When I was in public at the mall or beach, people would stare at me. I had to grow up faster than other kids and had to realize what I had and that it was normal for people to be curious,” says Isa-Bella. “I would explain to people my own age, saying just simply, ‘I was born this way.'”
Fortunately, Isa-Bella, who is from Canada, has always had the support of her family—especially her sister Danyka.
But even though Isa-Bella had a healthy sense of self-esteem and was a positive person, she just wanted to hide her leg.
Being on display so much wasn’t easy.
“As a mom, I would expect her to come back home from school crying because she couldn’t do something, but that day never came—not once,” her mother told the Daily Mail.
When Isa-bella was 19, however, she decided to do something that would inspire millions of people.
It all started with a selfie on a family vacation in Florida. But the photo soon took off on social media.
Many people thought it was brave of Isa-Bella to pose in her bikini and show off her leg.
“I think it’s important for people who have health issues to not only work on getting healthy but to work on loving yourself and accepting who you are,” says Isa-Bella.
“For me, beauty isn’t just on the outside. When I say someone is beautiful I see someone who makes you feel good when you’re around them,” Isa-Bella says. “My condition doesn’t define me and there’s no way I would let it stop me from wearing a cute swimsuit or a cute dress.”
Since her bikini images went viral, Isa-Bella has won a beauty contest in her hometown of Campbellton, New Brunswick.
She often speaks and writes about Parkes Weber Syndrome and explains what it’s like to live with lymphedema.
Her goal is to keep raising awareness and knowledge about what she and many others are going through.
Now, Isa-Bella has graduated and she regularly gets lymph draining massages from a physiotherapist, Manon Tardif, which have been promising so far.
We wish you great happiness in the future, Isa-Bella!
Watch this video to see how this brave girl is changing the standard of what is considered beautiful, one photo at a time.
Isn’t it uplifting to see such a happy, positive young girl doing her best to help others who might not always be happy with their bodies?
I think Isa-Bella deserves a big round of applause for her courage. It requires a lot of mental strength to dare to do what she’s done.
Please share her story. Hopefully, even more people will be inspired by this 19-year-old!
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