Little-known eating disorder nearly starved a 9-year-old: 'It was tormenting her'

Of the list of eating disorders, ARFID might not be one that you recognize – but it can be just as dangerous as the better-known conditions.

ARFID, or Avoidant Restrictive Food Intake Disorder, is defined by the Cleveland Clinic as a condition that limits a person’s food intake. It is recognized in the DSM-5 (the Diagnostic and Statistical Manual of Mental Illnesses by the American Psychiatric Association).

The disorder is marked by intense fear and anxiety about food and its specific qualities – like smell, taste and texture – or the consequences of eating, such as choking.

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Limiting food intake at an extreme level can lead to malnutrition and nutrient deficiencies, which 9-year-old Hannah of Los Angeles has experienced.

Fox News Digital spoke with Hannah and her mom, Michelle (who chose not to disclose their last name), about their journey with ARFID, which has included a prominent social media presence. (See the video at the top of this article.)

On Instagram, the duo has 1.5 million followers. Their TikTok account (@myarfidlife) features videos of Hannah bravely trying new foods, which have reached millions of views among nearly 460,000 followers.

Long before Hannah began sharing her journey on camera, her mom struggled with what she thought was just a "picky eater."

"I realized this was way more than just picky eating. This was obviously tormenting her."

Michelle said that Hannah, the youngest of three, was a "great eater" as a baby — until she was introduced to solid foods.

"She would protest, and she would spit the food out, or she would swat it out of my hand, or she would turn her head in the other direction," she said — all "pretty common" behaviors among kids.

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But by the time Hannah turned 3, Michelle said her daughter started refusing even the select foods she once ate.

"It was very frustrating for us because she was already so limited as to what she was willing to eat," she said.

Michelle, pictured here with her husband and three children, noted that Hannah’s case looked "very different" from her oldest son, who is autistic and had a hard time eating as a newborn. (@myarfidlife)

Since Hannah was still growing normally, her doctors "weren’t too concerned," and assumed she’d grow out of the picky eating.

After COVID-19 hit, Michelle said Hannah’s eating took a turn for the worse, and she eliminated even more food.

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"It was a big struggle to get her to eat anything at all," she said. "She had no interest in food whatsoever, and her growth started to slow down."

Hannah’s doctors ran tests to see if there was another health condition, such as IBS or celiac disease. She was referred to other specialists, from endocrinologists to nutritionists.

Hannah was also seeing a feeding therapist, which caused "a lot of stress and anxiety," her mother noted.

Hannah, pictured with mom Michelle, shared that she likes to draw, read and write, and play with slime. (@myarfidlife)

The doctors instructed Michelle to continue offering Hannah food when she was hungry, but her daughter’s condition only worsened.

"She couldn't handle being around food," she said. "She couldn't handle sitting at the dinner table with us. She couldn't handle the smell when I was cooking something in the kitchen."

As Hannah got older, she didn’t grow out of the condition, but was able to verbalize her internal struggle.

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"We were in a drive-thru and I asked [Hannah], ‘What would you like me to order?’ And she broke down at that moment and asked me, ‘Why is it that every time you talk about food, it makes me really anxious?’" Michelle recalled.

"Hearing those words … I realized that this was way more than just picky eating. This was obviously tormenting her."

Seeking help and ‘validation’

Michelle decided to seek help from a mental health care professional and found a therapist who specialized in ARFID. She said their first conversation was "so validating."

"I remember saying to her, ‘She has very few foods that she's willing to eat. And one of the foods is sour cream and onion Pringles, but they have to be in a special packaging. She refuses to eat the Pringles that come in the large container. They have to come in the individual small containers.’"

"And hearing the words from her — ‘This is so classic of ARFID’ — was so validating."

The "psycho-social interference" of ARFID can be difficult in social settings, such as at school and parties, according to an eating disorder expert. Hannah, pictured with her brothers, is living with the condition. (@myarfidlife)

The therapist first recommended nutritional protein shakes, which were difficult for Hannah to stomach.

But Hannah, who was dangerously underweight, told her mother, "I don’t want to live like this anymore."

"She was at risk of needing a feeding tube," Michelle told Fox News Digital. "She fell off the growth chart and wasn't gaining weight. She wasn't growing in height."

"I don’t want to live like this anymore."

"She just wasn't getting the nutrition she needed. She was very weak, lethargic and sleeping a lot."

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Michelle tried fun ways to get Hannah to drink the shakes, such as timing her and seeing if she could beat her previous record.

Next, Michelle suggested taking a video of Hannah drinking her shake to send to her new therapist.

Hannah was immediately interested in how her therapist would respond.

In her videos, Hannah says her famous tagline, "Here I go," before taking a bite of food. (TikTok/@myarfidlife)

Michelle then decided to share the video online to help clue in friends and family about what Hannah was dealing with, and to help explain why she wasn’t able to attend holidays or birthday parties due to the presence of food.

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Since that first post, Hannah and Michelle’s social media following has skyrocketed, with thousands of strangers cheering on and motivating Hannah.

"Hannah's grown so much physically and emotionally. Her confidence has soared," Michelle said. "She's a completely different kid … There’s curiosity and motivation and excitement — definitely still a lot of anxiety, but she's working through it."

Hannah and Michelle are pictured wearing "Here I Go" T-shirts, which are on sale to help promote ARFID awareness. (@myarfidlife)

Now 9, Hannah is using her platform to spread ARFID awareness and share tips she learns in therapy.

"Many people since we started our page have discovered that this is what they've dealt with their whole life," Michelle said.

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"It's just really nice to meet other people who can understand each other and share stories."

Hannah added that the encouragement she gets online helps motivate her to try new foods.

Video

"It makes me really happy because I know I'm helping other people," she told Fox News Digital. "And I’m also helping myself, too."

Hannah shared that she feels proud of her continuous bravery.

"I feel good," she said. "I’m really energetic today."

Tips for overcoming ARFID

During her sessions, Hannah undergoes exposure therapy as well as talk therapy.

"We do breathing exercises and coping skills," she said. "We also try different foods."

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Taylor Rae Homesley, executive director of The Emily Program’s Atlanta-based Eating Disorder Treatment Center, works with ARFID patients. She shared details of the condition with Fox News Digital.

While symptoms may vary, limited food intake based on texture or food group is a standout sign, one expert said. (iStock)

Since ARFID was coined as a "new term to describe something that's existed for a long time," Homesley said it has brought more awareness to the condition and how best to treat it.

There are three types of ARFID symptoms that parents should look for in their children, according to Homesley.

1. Fear of consequences

Examples are, "I'm afraid I'm going to throw up, I'm afraid I'm going to get a stomachache, I’m afraid I'm going to choke," the expert said. 

2. Lack of interest in eating or food

"These are kids and adults who just aren't motivated by food," she said. "They're the ones who may be playing outside for hours and hours and don't think, ‘It's time to eat now.’"

3. Avoidance of food based on sensory characteristics

"These are the kids and adults who are super limited in what they're eating due to those sensory things," Homesley said. "They may have aversions to taste, texture, smell or temperature of food."

ARFID "needs to be treated differently and recognized as a different eating disorder," one specialist said. (iStock)

"A lot of our patients with ARFID are what we consider super tasters," the therapist added. "They taste bitter flavors at a higher intensity than the rest of us."

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Treatment is still being developed for ARFID, but methods like cognitive behavioral therapy have proven helpful, according to Homesley.

Michelle noted that ARFID needs "a lot more awareness" and community building, which led her to start the ARFID Awareness nonprofit.

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"Help is not readily available, and it's very unfortunate because ARFID is lifelong, and it's something that does require treatment," she said.

"I feel like bringing community together and using our voices [is important] so that people see there's a need."