Find a healthcare providerHunger so overwhelming it can't be tuned out
For a rare few, insatiable hunger may make it feel as if your brain is constantly whispering in your ear, telling your body that you’re hungry. Often, it can feel like that voice has no “off” switch. This feeling may be caused by a rare genetic disease of obesity.
Common symptoms of rare genetic diseases of obesity
Individuals affected by rare genetic diseases of obesity can experience a range of symptoms, but two key symptoms are most common.
Extreme weight gain early in life
Children, from early infancy up to the age of 10, may gain far more weight than would be expected for their age. This is called early-onset obesity.
Insatiable hunger, also known as hyperphagia
“Lauren has told me a number of times that she just can’t stop thinking about food. She says it really emphatically and often she’s telling me that she’s still hungry. She’s had a really big snack, but she just can’t stop thinking about it and doesn’t feel full.”
Common signs of insatiable hunger
Symptoms vary from person to person. For some, symptoms are constant, while for others they may happen from time to time.
You may experience one or more of the following symptoms:
Intense hunger that may never go away
Taking a longer time to feel full while eating
Feeling hungry again right after a meal
Thinking about food constantly
Becoming very upset when food is unavailable
Food-seeking behavior (eg, sneaking or stealing food)
Why am I so hungry?
What does insatiable hunger feel like?
Rare genetic diseases of obesity may be uncommon, but the community of people living with these conditions is growing. Here are just a few stories of people who are experiencing it themselves or caring for a child who is.
Insatiable Hunger
Living with insatiable hunger, also known as hyperphagia.
Families affected by rare genetic disorders of obesity share their experiences.
DENISE AND EVAN:
Parents of two children living with a rare genetic disorder of obesity
DENISE:
Drake wakes up hungry and pretty much the first thing out of his mouth is what’s going to be for breakfast, and he goes to bed wondering what he’s going to have for breakfast next morning. For Drake it’s definitely an all-day thing.
What is insatiable hunger?
- Intense hunger that may never go away
- Thinking about food constantly
- Food-seeking behavior (e.g., sneaking food)
CHRISTINE
Mom of son living with Alström syndrome
CHRISTINE:
So it’s a constant. I think food is always on his mind. So he’s already starting to think about the next meal as he’s eating or finishing up the meal that he’s having.
AMY
Mom of two children living with Bardet-Biedl syndrome (BBS)
AMY:
Tyler has said to me that he just doesn’t know when to stop eating. Lauren has told me a number of times, that she just can’t stop thinking about food. And often she is telling me that she’s still hungry, but she had said a number of times “I just can’t stop thinking about it.”
CHRISTINE:
Where’s Colton, where’s Colton? And we’d hear like rustling in the pantry and find that Colton had gone to help himself of whatever there was. So, we had to put a lock on the pantry door.
What does insatiable hunger feel like?
- Taking a longer time to feel full while eating
- Becoming very upset when food is unavailable
- Feeling hungry again right after a meal
BECKY
Living with a suspected rare genetic disorder of obesity
BECKY:
My hunger is very physically painful. I get a lot of different physical symptoms that really hurt, and it can be headaches, I get dizzy, I can feel very shaky. I also have a very painful gnawing sensation in my stomach.
CHRISTINE:
He would cry because he was still hungry and we’d be like, “No, you’ve had plenty of food.” But it always seemed that he wanted more. Usually if we could get him food, then he’d be happy again and we’d move on, but it would only last for short periods of time.
DENISE:
It’s heartbreaking actually from a parent standpoint to watch your kid literally tell you that he’s so hungry after just eating, to the point where he hasn’t felt that he’s eaten at all.
Talk with your doctor if these signs of insatiable hunger sound familiar. They could be caused by a rare genetic disorder of obesity.
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Tips for managing insatiable hunger
If you or someone you care for has a rare genetic disease of obesity, you may feel overwhelmed and unsure of what to do.
Dr Amy McTighe, Director of Care Coordination and Prader-Willi Syndrome Program Manager at the Children’s Institute of Pittsburgh, shares tips and strategies for navigating insatiable hunger.
Food-related behaviors of rare genetic disorders of obesity. A closer look.
Do you wonder what food-related behaviors of rare genetic obesity disorders are? Let’s take a closer look.
Common behaviors related to food that I typically see with clients that I work with are focused around three major areas.
One, being overeating food. This typically means that they are eating food outside of scheduled mealtimes or eating large amounts of food whenever they have access to it.
Planned food foraging is also very common. That means that there is a specific plan by the person to obtain food in a large amount whenever someone is not watching. Also, I even see people that eat atypical food, such as raw food, pet food, or frozen foods.
Other common behaviors associated with insatiable hunger include:
- Engaging in tantrums to obtain food
- Verbal and physical aggression
- Arguing or manipulating to get food
- Sneaking and extensively seeking food
- Breaking locks on cabinets, refrigerators, or freezers, and
- Shoplifting or stealing food.
For more videos like this, don’t forget to check back on the LEAD for Rare Obesity Facebook page and LEADforRareObesity.com.
Rhythm, LEAD for Rare Obesity, and their logos are trademarks of Rhythm Pharmaceuticals, Inc.
© 2020 Rhythm Pharmaceuticals, Inc. All rights reserved. MC4R-C0282(D)-04.2020
Evironmental strategies
Total food security, or limiting food exposure
Positive behavior support and verbal praise
Environmental accommodations and modifications
Thinking outside of the box managing behaviors
Preparation
Predictability
Schedules and visuals
And safety plans.
For more videos like this, don’t forget to check back on the LEAD for Rare Obesity Facebook page and LEADforRareObesity.com.
Rhythm, LEAD for Rare Obesity, and their logos are trademarks of Rhythm Pharmaceuticals, Inc.
© 2020 Rhythm Pharmaceuticals, Inc. All rights reserved. MC4R-C0282(E)-04.2020
Locks and alarms: when are they a good idea?
Locks and/or alarms should be used so food cannot be accessed. I know it may seem cruel, but it can actually be a useful tool that is for the benefit of the individual.
Locks and alarms are safety measures to:
- Prevent binge eating
- Prevent extraordinary weight gain, and
- Decrease anxiety and guilt that food can be obtained.
For more videos like this, don’t forget to check back on the LEAD for Rare Obesity Facebook page and LEADforRareObesity.com.
Rhythm, LEAD for Rare Obesity, and their logos are trademarks of Rhythm Pharmaceuticals, Inc.
© 2020 Rhythm Pharmaceuticals, Inc. All rights reserved. MC4R-C0282(F)-04.2020
Establishing mealtime habits
A structured meal plan can be helpful in creating predictability and managing food-related behaviors.
- Establish a meal pattern immediately
- Post a daily or weekly menu
- No serving bowls at the table–this means that you are not participating in a family-style meal
- No participation in meal preparation and clean up
- Use disposable containers to make the meal look bigger
Posting a daily or weekly menu may vary based on your child’s level of food anxiety. Some children are able to handle one day’s worth of meals, and others are able to see the entire week’s worth of meals that are planned.
For more videos like this, don’t forget to check back on the LEAD for Rare Obesity Facebook page and LEADforRareObesity.com.
Rhythm, LEAD for Rare Obesity, and their logos are trademarks of Rhythm Pharmaceuticals, Inc.
© 2020 Rhythm Pharmaceuticals, Inc. All rights reserved. MC4R-C0282(G)-04.2020
5 tips for managing a meltdown
If your child struggles with insatiable hunger, even with your best planning and modifications, meltdowns will happen.
- Remain calm. Think before you speak. Speak in a calm voice and try not to show fear, anger, or frustration.
- Validate the emotion. You may say something like, “I can see you’re upset about what is happening.” Or, “I can see you’re anxious. How can I help you?”
- Suggest coping strategies. Slow counting and deep, slow breathing are often effective.
- Redirect in a calm, firm voice. “Would you like to work on a puzzle or play a game?”
- Guide your child through the problem-solving process. For example, you may say something like, “We don’t have soda, but we could drink hot tea or lemonade. Which one would you like?”
For more videos like this, don’t forget to check back on the LEAD for Rare Obesity Facebook page and LEADforRareObesity.com.
Rhythm, LEAD for Rare Obesity, and their logos are trademarks of Rhythm Pharmaceuticals, Inc.
© 2020 Rhythm Pharmaceuticals, Inc. All rights reserved. MC4R-C0282(H)-04.2020
