Hypothalamic Obesity New - Raymond A. Wood Foundation

A life-changing condition often misunderstood

Hypothalamic obesity (HO) is a rare but serious condition that can develop after damage to the hypothalamus, a part of the brain that helps regulate hunger, metabolism, sleep, and hormones. This damage often occurs after treatment for brain tumors such as craniopharyngioma, especially in children.

Unlike common obesity, hypothalamic obesity is not caused by lifestyle choices. It is a complex medical condition with deep biological roots. People with HO often experience:

Rapid, uncontrollable weight gain — even on strict diets

Fatigue and low energy

Trouble sleeping

Memory and mood issues

Reduced quality of life

At the Raymond A. Wood Foundation (RAWF), we know that families facing this diagnosis often feel confused, dismissed, or overwhelmed. We’re here to change that.

Why does hypothalamic obesity happen?

The hypothalamus acts like your body’s command center helping you feel full after eating, telling your body when to burn calories, and keeping your energy in balance. When this part of the brain is damaged (often during surgery or radiation for a brain tumor), it can no longer send the right signals. This can lead to:

Constant feelings of hunger (called hyperphagia)
A slowed metabolism
Disrupted hormone levels
Insulin resistance

That’s why weight gain in HO isn’t about willpower. It’s about biology.

What makes HO different?

	Common Obesity	Hypothalamic Obesity
Cause	Often lifestyle-related	Brain injury (hypothalamus)
Hunger cues	Usually work normally	Often missing or distorted
Metabolism	Can adjust to diet/exercise	Severely disrupted
Treatment response	Often responsive	Often resistant
Emotional burden	Variable	Often higher due to misunderstanding and stigma

You are not alone

HO can feel isolating. Many families are told to “just eat less and move more” — advice that simply doesn’t work for this condition.
We see you. We believe you. And we’re working to change the system.
At RAWF, we are:

Funding research to better understand HO and find new treatments
Fighting for access to therapies like GLP-1 medications and Setmelanotide
Connecting families through peer support and trusted information
Driving innovation, like our at-home sodium meter project to manage related complications

What can help?

There is no one-size-fits-all treatment, but HO can be managed with the right care team and support. Options may include:

Specialized medications that target brain and hormone pathways
Nutrition strategies tailored to hypothalamic damage
Support for mental health and caregiver fatigue
Access to clinical trials and advocacy for insurance coverage

Most importantly, care should come from providers who understand this condition and respect the lived experiences of patients and caregivers.

How RAWF supports families living with HO

We are here to:

Educate doctors and health systems about the realities of HO
Build a global patient registry to power patient-led research
Offer virtual education, caregiver panels, and ambassador support
Advocate for policy change to recognize HO as a distinct medical condition

Whether you’re newly diagnosed or years into your journey, RAWF offers resources, community, and a voice for change.

Nutrition Management for Hypothalamic Obesity 2023 Pituitary Brain Tumor Patient Conference

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Understanding Brings Hope — Support Begins Here

We’re working every day to ensure that hypothalamic obesity is no longer ignored, misunderstood, or dismissed. Together, we can create a world where every survivor has the chance to thrive.