Windsor Mother Advocates for Awareness of ARFID Disorder

In Windsor, Ontario, Ramzia El Annan is raising awareness about her son Mohammad Farhad’s struggle with avoidant/restrictive food intake disorder, known as ARFID. The eight-year-old has a limited diet, primarily consisting of boiled eggs and spaghetti or lasagna, which reflect his specific taste and texture preferences. Unlike other eating disorders, ARFID is not driven by body image concerns but is characterized by severe sensory reactions to most foods, making mealtime a challenging experience.

El Annan hopes to share their journey to shed light on the complexities of ARFID, which can often be misunderstood. “My son is a non-eater. Picky eating could be probably much easier,” she stated. “It’s not about a behavioral issue and it’s not about a mental health issue. It’s really more of hypersensitivity that leads to this fear of trying the food.” ARFID was formally recognized as a distinct eating disorder in 2013, though it had previously been categorized as a pediatric feeding disorder for children under six.

El Annan first noticed that something was different about Mohammad’s eating habits when he was a baby. It wasn’t until last year that she received a formal diagnosis. Children with ARFID may not recognize their hunger until they are extremely hungry, and even then, they often do not consume sufficient amounts of food. “This is the curve that we keep going up and down,” she explained, emphasizing the emotional and physical toll it takes on her son.

On a recent afternoon, El Annan prepared a smoothie for Mohammad, made from milk, wheat powder, banana, and vanilla pudding. Carefully monitoring his reactions, she encouraged him to try different foods by counting how many times he chewed and providing gentle coaxing. Despite the challenges, she remains committed to ensuring he receives enough nutrients while also attending therapy sessions.

ARFID presents significant challenges for families due to the considerable time and effort required to ensure proper nutrition. El Annan is determined to connect with other families facing similar struggles, advocating for greater recognition of ARFID in children and improved community support services. She also seeks more awareness within the education system, highlighting the need for accommodations that allow children like Mohammad to manage their eating difficulties at school.

While some services exist for older adolescents and adults, El Annan finds that many resources for children are limited and not covered by insurance, resulting in out-of-pocket expenses. She noted a prevalent misconception: many individuals mistakenly view ARFID as simple pickiness. “He tells me that, ‘This is for you, I’m trying it for you,’” she shared. “I encourage him to understand that this is for himself, to grow and stay healthy.”

Registered social worker Heather Leblanc, who works with the Bulimia Anorexia Nervosa Association (BANA) in Windsor, provides insight into the condition. She explained that individuals with ARFID may experience sensory sensitivity, fear of negative experiences like choking, or a complete disinterest in food. While there are no specific estimates for ARFID cases in Windsor-Essex, a Canadian study identified approximately 2.02 cases per 100,000 pediatric patients.

Leblanc emphasized the potential long-term consequences of untreated ARFID, including difficulties with weight gain, nutritional deficiencies, and associated social and psychological challenges. “It is really sad because the alternative is just to not engage in life,” she commented.

Treatment for ARFID is highly individualized and often includes cognitive behavioral therapy, with a team approach involving psychologists, dieticians, and therapists. However, many local services for youth begin at age 11, leaving younger children like Mohammad without adequate support. Leblanc urges parents to consult with pediatricians and seek out trained professionals in the region.

El Annan remains hopeful that by sharing her story, she can help others feel less isolated in their struggles with ARFID. “My hope is that with people speaking out, those with ARFID and their families will feel less shame and less alone,” she remarked.

For individuals seeking help with disordered eating, resources such as the National Eating Disorder Information Centre and Kids Help Phone are available to provide guidance and support.