(NEW YORK) — Eight-year-old Hannah is winning over audiences and raising awareness for a rare but serious disorder one bite at a time.
Hannah, along with her mother Michelle, has gone viral with her Instagram videos where she tries out little bits of certain food for the first time. She samples everything from mac and cheese to different yogurts, and ranks them on a scale from 1 to 10.
Some days honeydew melon has her fighting back tears; some days a taste of a sweet apple pear is followed by a smile.
The videos have been a form of therapy for Hannah, who suffers from avoidant restrictive food intake disorder, or ARFID, a disorder where a person is afraid of food to the point where they don’t want to consume it.
Hannah told ABC News’ Nightline that talking about her struggles and finding the right food has helped her push through.
“That helps motivate me,” she said. “Whenever I’m trying food, I think about all the people that I’m helping.”
Between 0.5% to 5% of children and adults in the general population have ARFID, which was added as an official diagnosis in feeding and eating disorders in 2013, according to the National Eating Disorders Association.
Some research suggests a possible connection with ARFID and conditions like Autism, ADHD and Anxiety, according to the American Psychiatric Association.
The condition is often confused with more common eating disorders like anorexia or bulimia, but ARFID is not about a person’s self-image or drive to be thin, according to mental health experts.
“The people that have this diagnosis have a fear of food, meaning a fear consuming food, [and] a fear of being around food. That can look like a fear of texture, [or] different aversions to smells. It can also present in a form of fear of choking, vomiting, or being allergic to the food,” Danielle Gordon, a therapist who specializes in eating disorders, told Nightline.
Gordon diagnosed Hannah with ARFID after her parents sought solutions to her extra picky eating. Michelle told Nightline that they were growing concerned about Hannah’s health.
“We noticed when she went to get her physicals at the doctors, and her growth was not increasing at the rate that it was supposed to. She ended up falling off of the growth chart eventually,” she said. “Often times she couldn’t even be in the same room with us when we were eating.”
Gordon recommends exposure therapy to her ARFID patients and Michelle said it has greatly helped her daughter.
“She is on cloud nine,” Michelle, who asked Nightline not to disclose her family’s last name, said of Hannah. “She’s very happy to, you know, prove to herself and prove to everybody else that’s watching her that she can do it, and that she can overcome these challenges.”
In January, Hannah and Michelle started Hannah’s Instagram page and began “My ARFID Life,” bringing in fans from around the world, including those who are also living with the condition.
They said they have received so many good comments from people who are also suffering from ARFID but didn’t have an outlet for their feelings.
Cassidy Arvidson, 27, of Brooklyn, told Nightline that after she was diagnosed with ARFID three years ago she couldn’t find anyone in the community who she could talk to about her struggle.
“ARFID affects my life every single day. It affects my life socially more than anything,” she said. “And it is very exhausting dating, specifically. I really do not enjoy. And then other social events like going out with friends, meeting new people, work events.”
Arvidson said she was touched and inspired by Hannah’s posts.
“She is so brave in doing all the exposures that she does,” she said.
Gordon and other advocates hope more can be done to shine a light on ARFID.
“I think that we need to do a better job as an eating disorder community to give ARFID as much of a spotlight as the other disorders,” she said. “And even research-wise, we need to do more work around this area to really help people and provide proper treatment for all.”
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