Big Ed Brown may have been born with a rare genetic disorder that caused his unique appearance, but he isn’t letting it define him or hold him back.
The 90 Day Fiance star was born with Klippel-Feil syndrome, also known as KFS, which results in the appearance of a short neck.
The rare skeletal disorder is primarily characterized by an “abnormal union or fusion of two or more bones of the spinal column (vertebrae) within the neck (cervical vertebrae).”
In addition to a short neck, affected patients may also suffer from restricted movement of the head and neck, a low hairline at the base of the neck, cleft palate, hearing loss, and/or eye abnormalities.
The condition has no cure, and for Ed, he’s learned to make it work to his advantage.
During a recent interview with TODAY, Big Ed opened up about the stares he has received since childhood and the positive attention he’s received as a result of being diagnosed with KFS.
Big Ed Brown tells others with KFS he doesn’t let his condition define him
Since becoming famous after appearing on the 90 Day Fiance franchise, Big Ed has gained countless fans who also suffer from KFS.
When they ask him how he gained so much confidence, he tells them, “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,” Big Ed shared.
As a child growing up with KFS, Ed admits that he was at the center of some harsh bullying. Other kids would call him names like “neckless” or “no neck Ed,” something he calls “very hurtful.”
But Ed says he used his upper body strength to his advantage, becoming “kind of a bodybuilder” at a young age.
In high school, his passion for weightlifting changed how his peers viewed him, and as he recalls, “I became kind of popular because of my condition.”
Ed believes there is a reason he looks the way he does
As Ed ages, he’s paying extra attention to his body to prevent some possible bone issues KFS can cause by staying as active as possible.
Ed told TODAY that he’s “in a really good place right now” and that KFS has “actually helped” him more than it “hurt” him.
“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 shared. “I think there’s a reason for everything.”
Season 8 of 90 Day Fiance: Happily Ever After? airs on Sundays at 8/7c on TLC.