Big Ed of '90 Day Fiancé' on the rare syndrome that's resulted in having a shorter neck than most

People stop Ed Brown, aka Big Ed, on the street all the time when they recognize the "90 day Fiancé" star. But even before he started appearing on the TLC reality series, Brown was used to drawing attention from strangers for a different reason.

"Since I was a young child, young adults and kids especially, they would always stare at me. They just have always found me kind of interesting. And I think it was due to my physical characteristics," Brown tells TODAY.com.

The 59-year-old is referring to his short neck and larger-than-normal rib cage, two of the most common physical attributes of someone with Klippel-Feil syndrome (KFS).

What is Klippel-Feil syndrome?

Per the Cleveland Clinic, Klippel-Feil syndrome is "a condition in which you have two or more neck bones (vertebrae) fused together." Spine abnormalities are normal with KFS, and symptoms include a short neck, limited range of motion in the neck and a low back-of-head hairline.

Treatments may include surgery and devices to protect the spine.

KFS is rare, and the Cleveland Clinic estimates that the condition affects only one in 40,000-42,000 newborns worldwide.

What happened with Big Ed's neck?

Brown lives Klippel-Feil syndrome, which means that he has multiple neck bones fused together, giving him the appearance of a short neck. It's not known what causes the condition.

Because of its rare nature, Brown wasn’t diagnosed with KFS until he was a teenager. However, a doctor did once tell Brown’s parents that their newborn son would experience “a lot of complications” when he got older. (The condition can be visible as early as the first trimester of pregnancy via ultrasound, per Cleveland Clinic.)

“They’re telling them all these things that could possibly go wrong because they didn’t know what it was. And my dad told my mom, ‘No, he’s perfect. Don’t worry about,' which is kind of nice. But they really didn’t know what it was until later,” he says.

When he first appeared on Season 4 of “90 Day Fiancé: Before The 90 Days,” Brown sparked viewers’ curiosity with his personal story and physical appearance.

Since then, the reality star has heard from countless viewers from across the world who also have KFS. Some of them have asked for dating pointers and some simply want to know how Brown summons his confidence.

“I’ll always tell them, ‘I never allowed my condition to define who I was,’” he says.

Of course, Brown encounters haters who make “funny puns” about his short neck, but they “don’t really bother” him anymore.

“You have to love who you are and you have to be able to laugh at yourself,” he says.

Big Ed and growing up with a neck condition

As a child, Brown experienced his fair share of bullying over his appearance — “They would call me ‘neckless’ and ‘no neck’ and ‘no neck Ed’ and everything under the sun, and it was very hurtful," he says — but he also discovered one silver lining.

“I always have had a lot of upper body strength. So I was, I was able to use that to my advantage. And so I became a kind of a bodybuilder at a very young age," he says.

Brown's natural strength led him to take up gymnastics. In junior high school, he was doing a double back flip when he fell on his head. Worried that his neck might be broken, 13-year-old Brown went to the hospital and discovered that a part of his spinal cord was exposed.

Contact sports and gymnastics were off the table at this point, which was “devastating” for Brown. However, he decided to make the best of his new limitations and soon developed a passion for weightlifting.

In high school, Brown saw a shift in his classmates' views towards him.

"I became kind of popular because of my condition," and people stopped making fun of his appearance as much, he recalls.

From there, Brown began to "develop my entertainment side" and build confidence, he says.

Adapting to Klippel-Feil syndrome

Klippel-Feil syndrome will always be a part of Brown's life, but he's learned to adapt to any physical limitations that come along with the condition. For instance, he has limited range of movement in his neck and relies on mirrors to assist him while driving.

Brown also has a minor curve to his spine, which hasn't affected him much yet, but as he gets older, he may run into some bone issues.

"I’m hoping not (to) and I’m trying to stay active as much I can nowadays to prevent that," he says.

Overall, Brown says he's "in a really good place right now" mentally and physically, and that he's learned to embrace living with KFS.

"It has actually helped me, I think, more than it has hurt me," he says.

When he first started appearing on reality TV, Brown "never understood the magnitude" of the platform he'd been given to spread awareness about KFS. He quickly realized that he had an obligation to use his newfound celebrity to give back in some way.

These days, Brown serves as the chairman of a nonprofit called Remembering Nicholas, which raises awareness about the dangers of sleeping with an infant child in your bed.

Paying it forward, he says, is a major goal now as a public figure. Teaching people to embrace their looks is another.

“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 said. "I think there’s a reason for everything."

This article was originally published on TODAY.com