PWS DESK Independent handbook · 中文 ES

This site is not the association. US crisis calls: pwsausa.org · 941-312-0400. We do not answer that phone.

Comic drawing of an empty plate and unused fork
HYPERPHAGIA

Hyperphagia here is a hypothalamic problem, not a willpower problem.

Satiety is delayed or incomplete. Miller's phase 3 had a median onset of 8 years (often 5 to 13). Some adults later reach phase 4 and can feel full. Most do not. A 2025 US drug approval does not replace food locks.

MECHANISM

Satiety is often incomplete

Thinking about food can take up a lot of the day. Sneaking is common and is not a character issue. People whose weight is under control, after a large binge, are the group gastric alerts keep naming.

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DRUGS

One US approval in 2025. Food storage still matters.

VYKAT XR is the first US drug indicated for hyperphagia in PWS, from age 4. It needs a clinician who knows this syndrome. Carbetocin missed every endpoint in a 175-person phase 3 trial and development stopped.

Sources: American Journal of Medical Genetics, 2011 · FDA orphan listing, approved 26 March 2025 · Acadia COMPASS statement, September 2025