Woman with rare drooping eye condition reveals moment she found out her real diagnosis

A woman with a rare condition has recalled the moment she found out she didn't just have a 'lazy eye'.

Marion, 35, from Los Angeles, US, only discovered her true diagnosis of Marcus Gunn syndrome a few years ago after seeing a video on TikTok, despite having lived with her eye twitch for her entire life.

For those unfamiliar, Marcus Gunn syndrome is a congenital condition where the nerve that controls the eyelid is connected to the jaw.

This triggers movements like someone's eyelid lifting or drooping when they eat, talk, or open their mouth - essentially, when the jaw moves, the eyelid moves too.

Also known as jaw winking syndrome, it's usually most noticeable when eating while looking down, or when drinking from a straw or water bottle.

As one of only hundreds of people in the world who are documented to have the condition, as reported by the National Organization for Rare Disorders, Marion films herself eating and posts the videos to social media (@marionsworldd) to help others feel represented.

'I never knew what it was'

Because Marcus Gunn syndrome is so rarely spoken about, Marion herself only discovered her true diagnosis a few years back.

Speaking to Tyla, she explained: "My parents noticed it when I was really young. I think I went to the eye doctor when I was five. The doctor checked me out and said, 'She's fine as long as it's not impacting her vision negatively or impacting her in any negative way, then she should be fine'."

Marion added: "But he didn't give me the name Marcus Gunn syndrome - he didn't give us that diagnosis back then. I just kind of always thought it was a lazy eye growing up. I never knew what it was called or what it was, and I actually saw a girl post it on TikTok a few years ago and that's when I found out the name as well."

The influencer said it was a 'good feeling' knowing she wasn't alone and it was 'exciting' to put a name to the condition as she'd never met anyone who also had the same one.

She continued: "It was kind of exciting. I was like, 'Oh my gosh, this is what it's called! This is what I have!' And after not knowing for so long, it's kind of crazy. You see someone else having it and there's a lot of comments on my videos too - people saying, 'I've never seen anyone else who has it' - and I felt the same way too because I've never met anyone in my entire life that has it.

"So it's a good feeling to know that you're not alone and that there's a name and it's called a certain thing."

'I need to post more about this'

For Marion, her eyelid lifts up when she eats, as well as sometimes when she drinks from a straw or water bottle or looks down.

After being 'super self-conscious' about it and trying to hide it during his teenage years, she wants to make life a little easier for those who are currently growing up with physical differences.

She was prompted to open up to her followers about the condition after one of her snack review TikTok videos was swarmed with comments asking about her eye.

Marion explained: "I had posted a video about Trader Joe's candy and did a taste test video. A lot of comments were talking about my eye and it kind of went viral.

"It just kind of clicked for me: I was like, 'I need to post more about this'. I don't know why I haven't until now so I started posting more about it and like just really emphasising eating on camera, showing the eye and talking about it."

Her videos raising awareness of the condition have racked up millions of views and the comments sections are flooded with people also just realising they might have Marcus Gunn syndrome.

One Instagram user wrote: "Good lord. I have this condition since birth. But I did not know it was a thing. I've been bullied for this all my life."

Sadly, a lot of the comments echoed this, which has only spurred Marion on more to keep spreading the word and educating people about the condition.

"I was super self-conscious about it going into my teens and in college, you know, just being a girl and trying to fit in and the pressures of appearance," she recalled.

She added: "I would try to hide it or eating slower. But in terms of bullying, I haven't gotten bullied until I started posting online recently, but it's too late - I don't care anymore and I'm confident in it and I'm just trying to post and raise awareness more for people who do get bullied."

Marion said she's gotten 'so many messages from people or parents of kids that have it', some of whom have said they developed an eating disorder or won't eat unless they're alone because of it.

"Just really horrible things that people should not have to go through," she urged.

As for her own social media trolls, nothing is going to stop her from raising vital awareness and helping others feel seen.

'It's part of who I am'

She affirmed: "You know how people are on the internet they're gonna bully, they're gonna say mean things and it is what it is but it's not gonna stop me.

"I'm honestly floored by the responses of how many people have it because it is a rare condition. But it seems like the statistics and how many people are recorded to have it aren't updated. So many more people have it and it was just crazy to see that."

While there is an option for surgery, it's not something Marion would consider as unlike some other cases, her vision isn't affected and it's not negatively impacting her.

She gushed: "I've learned to be confident in it and embrace it. It's part of who I am and I'm not worried or self-conscious. I'm sharing my story and awareness because if it helps one person feel more comfortable or confident in their skin then sharing it is worth it.

"We're all equal and nobody's better than anybody else just because their eye doesn't move when they eat or any other physical condition - you're loved, you're not alone and you're beautiful regardless."