How hyperphagia affects patients and their families
Obsessing about food is a defining symptom of PWS
“Hyperphagia,” or the extreme drive to consume food, is a sizable word that is difficult for me to pronounce. It is a symptom of Prader-Willi syndrome (PWS), which my adult son, Robert, has.
In people with PWS, the hypothalamus, a brain structure that regulates several bodily functions, including hunger and thirst, doesn’t function properly. This can cause people like Robert to obsess over food and have anxiety about portions or the timing of meals and snacks. It can have a dramatic impact on life.
For example, work opportunities for people with PWS are often limited because of readily available food. Credit cards and finances must be closely supervised by guardians or care center staff, and even using public transportation can be risky. Movies and other entertainment must be closely monitored due to the availability of snacks. And the list goes on.
No doubt, no hope
In its principles for food security, the Prader-Willi Syndrome Association | USA uses the slogan “No Doubt + No Hope = No Disappointment.” The association explains: “No doubt when the next meal or snack will be served … [and] no hope to obtain unauthorized [or] additional food.” This helps to provide consistency, as meals and snacks are served at the same time each day using portion control, and no other food is served despite the “puppy dog eyes” we caregivers and family members often see. By following this formula, manipulation simply doesn’t work.
Recently, I had to tell Robert, 32, that he couldn’t join us on a family trip due to the syndrome. I apologized to him, saying, “I’m sorry you can’t visit your cousins in Hawaii. It’s just that they have food everywhere in their home.” I felt sad about it, but after a pause, his response was, “Well, I had a good breakfast.” He described everything he’d eaten, including the sugar packet he’d stirred into his coffee.
I think this is a perfect example of food fixation. To me, it’s similar to euphoric recall, which a HuffPost article described as “a psychological phenomenon where individuals remember past experiences, particularly negative ones, in a more positive light than they actually were.” I say this because I believe that talking about food that people with PWS have eaten brings them comfort. I know Robert wants to go to Hawaii, and talking about food makes it hurt a little less.
Like many chronic health conditions, not everyone with PWS experiences it in the same way. Some, like Robert, lived in a home where food was never locked up. As I’ve mentioned before, I used to operate a home-based catering business. Food was often being cooked or stored on the countertops while waiting to be delivered. I didn’t know that this caused Robert anxiety until he was much older. Nevertheless, he never touched any of the food that was being prepared.
Now that he’s an adult, I asked him how this part of my business had made him feel. “You never stole food,” I reminded him.
“I thought about it a lot,” he replied.
Looking back, I feel terribly guilty about all of this. On the other hand, my business helped our family support Robert’s needs. And being able to cook spectacular food for parties gave me the flexibility to take Robert to his doctor appointments.
I do acknowledge, though, that for some people with PWS, this arrangement never would’ve worked. I’ve heard stories from other parents who’ve put alarms on their children’s bedroom doors, which allowed everyone to sleep at night.
The U.S. Food and Drug Administration recently approved Vykat XR (diazoxide choline), which aims to reduce hyperphagia in adults and children 4 years and older with PWS. It works by reducing appetite-stimulating proteins in the brain.
Other important components of managing this syndrome include nutrition and having a good multidisciplinary care team.
I remain hopeful that a cure for PWS will one day be discovered — something that would allow people with this syndrome to live in the moment rather than constantly thinking about their next meal.
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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