8-year-old girl with rare eating disorder empowers others by sharing journey on social media

Imagine a fear of food so strong, it can drive a person to starvation. A silent and widely misunderstood eating disorder is gaining attention thanks to an 8-year-old girl who is empowering others on social media.

More than 1 million Instagram followers are fascinated with 8-year-old Hannah's progress as she faces her fear of food.

It's a challenge many people don't understand and some are judgmental.

"I get pretty mad because I know that I'm not a picky eater, and it's actually a lot worse than that," Hannah said.

Hannah can go all day with little desire to eat.

"She was much smaller than her peers and she wasn't getting the nutrition she needed, and her growth was affected by it," Hannah's mom Michelle said.

They're only using their first names because of some of the backlash they've received on social media.

Hannah would be gripped with anxiety at restaurants, school parties or family gatherings. Even discussions about food were nerve-wracking for her.

"We were desperate. She was on the verge of needing a feeding tube," Michelle said.

Hannah's mom soon learned of a little-known eating disorder: avoidant restrictive food intake disorder, or ARFID.

"While the name is new, the symptoms and the condition is not. There is a huge anxiety component," said Stephanie Marcy, a clinical psychologist at Children's Hospital Los Angeles. "It can be essentially a phobic response and a fear of food or eating."

A negative experience like vomiting or food illness could also lead to this condition. Some may simply have a disinterest in food all together. Unlike other eating disorders like anorexia, ARFID has nothing to do with body image.

"To meet the diagnostic criteria you need to not have the preoccupation with body, size or weight," Marcy said.

At CHLA, Marcy said treatment for ARFID requires a team approach. Hannah has undergone behavioral modification, nutritional counseling and exposure therapy. But even with a diagnosis, many of her relatives still didn't get it.

"They said she's just picky. If you would take all the snacks away, I promise you she would eat. Send her to my house for a week," Michelle said.

That's when Hannah turned to social media to explain to her relatives and friends what her ARFID life was all about.

"She's motivated to try foods now that she would never have tried before," Michelle said.

Studies show between half a percent to 5% of the general population have the disorder.

Because so little is known about ARFID, Hannah's online presence attracted hurtful and uneducated comments.

"You have no idea how many times people have said they've called the police on me and Child Protective Services," Michelle said.

Despite the haters, creating these posts motivates Hannah to challenge herself.

"There's all these people who are watching her and she's making a difference, not only in her life but in their life also," Michelle said.

To build awareness, Hannah started the one-bite challenge to give people a glimpse into what ARFID is like.

"Everybody has a food that they're afraid to try," Michelle said.

This is how the ARFID awareness-one bite challenge works. You pick a food that you've been too afraid to try, record yourself eating it, post it anywhere on social media, then use the hashtag #onebitechallenge and nominate two or more people to try it as well.

"We're hoping to raise funds for more research and support resources. We would love to help families," Michelle said.

Since she started her journey, Hannah's list of foods that she no longer fears is growing. And she's making a lot of progress.

"We just hope that she continues to grow and thrive," Michelle said.

"I'm really happy that I'm helping people because I know that there's like a lot of people who aren't getting help," Hannah said.

Hannah hopes to reach as many people as she can, one bite at a time.