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Stories & Tips

These are the stories of people living with confirmed or suspected rare genetic disorders of obesity. Because these disorders are so rare, people who have them often feel isolated or unsure about how to proceed. If you or a loved one is affected by a rare genetic disorder of obesity, we hope that these stories make you feel a little less alone. If you’re comfortable sharing your own story, or even just a helpful tip, we’d love to hear it.

“I think there's a lot of education needed, and I’m very interested in participating in that.”

“Living with a rare genetic disorder of obesity, you can feel so alone. I don’t want anyone to feel that way.”

“We’re sharing our story because it’s important for me to connect and build a community of understanding.”

Share your story (or a tip)

Not sure where to start? Use the bullets below to help guide you. Keep in mind we won’t be able to post every story that’s submitted, but we will do our best to keep you updated.

If you’re not ready to share your full story, that’s okay. You can also submit a piece of advice based on your experience with a rare genetic disorder of obesity.

When did your journey with rare obesity begin?

  • When did you first sense that something wasn’t “right?” How did you know?
  • Did you/your child feel different from your/their peers?
  • Talk about your child’s weight gain, or about your own as a child or adolescent.

Tell us about your hunger

  • How often do you/does your child feel hungry? How would you describe your/their hunger?
  • How does your/your child’s hunger make you/them feel, physically speaking?
  • How does your/your child’s hunger affect you/them on a daily basis?

Tell us about your experience

  • What does a typical day look like for you/your child?
  • What is it like to live in yours/your child’s shoes? What would you like others to know about insatiable hunger and rare genetic disorders of obesity?
  • What have been the biggest roadblocks in your journey? How did you get around them?
  • If you/your child have a diagnosis, what was it like to get one?
  • If you/your child do not have a diagnosis, what would a diagnosis mean to you?
  • What tips or pieces of advice would you share with other families in your situation?

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