“90 Day Fiancé'”s 'Big Ed' Talks Overcoming ‘Hurtful’ Comments About Rare Condition That Causes His Shorter Neck

“I never allowed my condition to define who I was. You have to love who you are and you have to be able to laugh at yourself,” the reality star said

<p>Big Ed/Instagram</p>

Big Ed/Instagram

Ed "Big Ed" Brown is sharing how he remains confident in his physical appearance.

The 90 Day Fiancé star, 59, spoke to TODAY about being diagnosed with Klippel Feil syndrome as a teenager and how he’s using his platform to help others living with the rare condition.

"Since I was a young child, young adults and kids especially, they would always stare at me,” he told the outlet. “They just have always found me kind of interesting. And I think it was due to my physical characteristics."

Klippel Feil syndrome (KFS) is a rare condition where two or more bones in the neck are fused together, which can cause spine abnormalities, according to the Cleveland Clinic. It’s a congenital condition and associated with symptoms like a short neck, limited neck and back mobility, nerve damage and a low back-of-head hairline.

Brown said that his childhood was filled with bullying due to his looks. “They would call me ‘neckless’ and ‘no neck’ and ‘no neck Ed’ and everything under the sun, and it was very hurtful," he said.

But eventually kids stopped making fun of him and at that point, he said he started to "develop my entertainment side" in order to build confidence.

Related: '90 Day Fiancé' 's Big Ed Opens Up About Being an Inspiration to People with Klippel Feil Syndrome



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Brown, who has a minor curve to his spine, has since learned to adapt to the physical limitations that come with KFS. He said he’s embracing life with the condition, even finding a love for weightlifting and staying active.

The interior designer boasted that he’s "in a really good place right now" mentally and physically, adding that KFS “has actually helped me, I think, more than it has hurt me."

Since joining 90 Day Fiancé, the reality star said he’s received tons of messages from people across the world who are also living with KFS, asking how he’s able to have so much confidence. He admitted that he still gets his fair share of mean comments about his appearance, but they “don’t really bother” him anymore.

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Related: 90 Day's Big Ed Gets Choked Up as He Says Goodbye to Liz's Daughter but Still Feels They 'Both Dodged a Bullet'

“I’ll always tell them, ‘I never allowed my condition to define who I was,’ ” he said. “You have to love who you are and you have to be able to laugh at yourself.”

Brown said when he first appeared on the TLC series, he "never understood the magnitude" of the platform he'd have, but he’s vowing to use every opportunity he gets to spread awareness about KFS.

“God made us all 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 outlet. "I think there’s a reason for everything."

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