Calls about a rare eating disorder have jumped in the U.K. over the last five years, according to figures collected by the charity Beat.
The eating disorder charity received 2,054 calls last year about avoidant/restrictive food intake disorder — a sevenfold increase on 2018, data shared with The Guardian show.
In 2018, Beat received just 295 calls about ARFID, which can lead to dangerously restricted diets, malnutrition and social problems.
But there’s limited specialist support available for the often poorly-understood condition, the charity stated.
Beat chief executive Andrew Radford told The Guardian the “dramatic increase” in people seeking support for the disorder was “extremely worrying,” in part because “specialist care isn’t always readily available.”
“All too often we hear from people who have been unable to get treatment close to home or have faced waits of months or even years to get the help they need,” Radford said.
Just last week, a coroner warned about a lack of awareness of ARFID among health, education and social professionals after the death of an autistic boy who had become severely malnourished.
What is ARFID?
ARFID is characterized by the avoidance of food. That might mean a person doesn’t eat particular types of food, or they eat a limited amount of food overall, for example.
In some cases, people may have a lack of interest in food or fail to realize they need to eat more.
Some people may be sensitive to things like the texture, smell or taste of food, while some might avoid eating because of previous traumatic events related to food like vomiting or choking.
There may be a combination of factors behind a restricted diet.
People of any age can have ARFID, but it most commonly develops in infants and young children, according to the National Eating Disorders Association.
Many children may be fussy about food at one point or another. But people with ARFID have a diet so restricted it doesn’t meet their nutritional needs and they experience “medical, nutritional and/or psychosocial problems” as a result.
Although it can lead to low body weight, people with ARFID may or may be underweight.
Unlike some other eating disorders, the avoidance of food itself isn’t related an individual’s feelings about their body image or weight, Radford said.
“Instead, it might be due to having sensory issues around the texture or taste of certain foods, fear about eating due to distressing experiences with food, for example choking, or lack of interest in eating.”
Some people with ARFID won’t have any other medical conditions. It can also present in people with people with other conditions; most commonly autism, attention deficit and hyperactivity disorder and anxiety disorders, according to Beat.
‘Her spark is coming back’
It’s currently Eating Disorders Awareness Week on both sides of the pond, and in the U.K., health providers and charities are focused on raising awareness of ARFID.
Public health organizations like mental health and community provider Nottinghamshire Healthcare NHS Foundation Trust have shared stories from families affected by the disorder.
One parent told the organization: “My teenage daughter, previously a reasonable eater in terms of variety and volume, quite quickly lost all interest in food, complained of feeling sick before and during eating and became an anxious child.
“She lost a lot of weight rapidly and became listless and had little energy for the things she loved to do — we felt she was fading before our very eyes, and we had no idea what to do about it.”
With “tireless” personalized care from a specialist team, she was able to put on weight she had lost, improve her physical and mental state and increase the types of foods she could eat, the parent said.
“It has taken a lot of time, patience and support” from healthcare professionals, but “we are now beginning to reap the benefits,” the parent said.
“Her eating is much improved, the angry outbursts around food have subsided and she is regaining a lot of her life and her spark is coming back too.”
