Ed “Big Ed” Brown talks about staying confident in his physical appearance.
The Fiancé of 90 days star, 59, spoke with TODAY about being diagnosed with Klippel Feil Syndrome as a teenager and how he uses his platform to help others living with the rare condition.
“Ever since I was a little kid, young adults and kids especially, they would always stare at me,” he told the newspaper. “They always found me interesting. And I think it’s because of my physical characteristics.”
Klippel Feil syndrome (KFS) is a rare condition in which two or more bones in the neck are fused together, which can cause abnormalities of the spine, according to the Cleveland Clinic. It is a congenital condition and is associated with symptoms such as a short neck, limited neck and back mobility, nerve damage and a low hairline on the back of the head.
Brown said his childhood was filled with bullying because of his appearance. “They would call me ‘neckless’ and ‘neckless’ and ‘neckless Ed’ and everything under the sun, and it was very painful,” he said.
But eventually the kids stopped making fun of him and at that point, he said, he started to “develop my fun side” to build his confidence.
’90 Day Fiancé’ Big Ed opens up about being an inspiration to people with Klippel Feil Syndrome
TLC
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Brown, who has a minor curvature of the spine, has since learned to adapt to the physical limitations that come with KFS. He said he is embracing life with the condition, even finding a love for lifting weights and staying active.
The interior designer boasted that he’s “in a really good place right now” mentally and physically, adding that KFS “actually helped me, I think, more than it hurt me.”
Since joining Fiancé of 90 days, the reality star said he’s received tons of messages from people all over the world who also live with KFS, asking him how he can have so much confidence. He admitted he still gets his fair share of mean comments about his looks, but they “don’t really bother him” anymore.
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“I’ll always tell them, ‘I’ve never let my condition define who I am,'” he said. “You have to love who you are and you have to be able to laugh at yourself.”
Brown said that when he first appeared on the TLC series, he “never understood the magnitude” of the platform he would have, but vowed to take every opportunity he gets to spread awareness of KFS.
“God made us the way we are. I believe that in my heart and there’s a reason why I look the way I do,” he told the newspaper. “I think there’s a reason for everything.”
Categories: Trends
Source: HIS Education