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A Rare Diagnosis
OAC Member Rick Hodgkins has lived with hypothalamic obesity (HyOb) for most of his life—a rare medical condition caused by damage or dysfunction to the hypothalamus, the part of the brain that regulates hunger and energy balance.
For Rick, this condition has meant grappling with weight bias and stigma at nearly every turn. The broader public often fails to grasp the complex factors that contribute to obesity, such as genetics and biology, as in Rick’s case.
“My experience with obesity has been nothing but blame and shame,” Rick shares. “Growing up, no one understood hypothalamic obesity or cared about it. When I was born in the 1970s, this condition wasn’t even recognized.”
Turning Pain into Advocacy
Rick’s journey began early in life. MRI imaging of his brain revealed structural abnormalities in his brain, and misguided treatments during his youth only made things worse. The effects of HyOb led to significant weight gain and worsened his diabetes, ultimately causing diabetic retinopathy—a serious complication of diabetes that can result in vision loss or blindness.
“I’ve dealt with weight bias all my life, from my own family to strangers,” Rick says. “People have made me feel like having obesity means I’m less worthy of respect and care. It’s hurtful and exhausting.”
Joining a Supportive Community
But Rick’s story is about more than just challenges—it’s also about resilience and advocacy. In 2019, he discovered the Obesity Action Coalition (OAC) through a bariatric surgeon in his area who was a member of the organization and encouraged him to join.
“I joined the OAC to advocate for people like me, to push for better treatments and to challenge the stigma that surrounds my rare form of obesity,” Rick says.
Through the OAC, Rick found people who share his passion for changing perceptions, fighting weight bias and equipping people with the tools they need to improve their health. His story is a reminder not to judge a book by its cover and to approach others with understanding and compassion.