We have a different perspective on weight-loss drugs

“Isn’t it ironic, don’t you think?” my wife, Jill, asked, quoting Alanis Morissette, her favorite singer. “Everywhere you look, people are talking about medications like Ozempic and Wegovy to help with weight loss, while the Huntington’s disease community is desperately trying to keep weight on our loved ones.”

Jill and our daughter, Alexus, both inherited the faulty gene that causes Huntington’s, so I knew exactly what she meant. One of the disease’s symptoms — constant involuntary movements called chorea — relentlessly burns calories, like an engine that can’t be switched off.

“The movements alone make it nearly impossible to maintain weight,” Jill said. “And then there’s the challenge of actually eating.”

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Jill’s eyes grew moist as she remembered her late father’s struggle with Huntington’s.

“The swallowing difficulties were the hardest to watch,” she said. “People don’t realize that Huntington’s affects every muscle, including the ones we use to chew and swallow. My dad would try so hard to do everyday tasks that we take for granted, like eating, but it was like his body had declared war on itself.”

Our conversation turned to the recent media frenzy regarding weight-loss medications.

“Sometimes I want to shout at the television,” Jill said. “Everyone’s celebrating these miracle weight-loss drugs, while I’m sitting here wishing someone would develop an ‘anti-Ozempic’ — something to help HD patients gain weight, or at least keep their weight stable.”

She remembered the feeding tube her father eventually needed.

“You know what’s strange? I actually found myself wondering if I would choose a feeding tube if and when I was in his shoes,” she said. ”With Huntington’s, we watch our loved ones waste away, and there’s so little we can do.”

Over the years, Jill and her mother, Edwina, developed their own arsenal of high-calorie strategies: smoothies packed with protein powder, butter added to everything possible, ice cream mixed with the weight gainer they used in everything he ate.

“It’s amazing how much time went into making food so that he wouldn’t starve,” she added. “All those extra calories helped, but keeping weight on someone in the end-stage of Huntington’s is like digging yourself out of quicksand.”

I hugged her knowing that someday I may need to do the same, so I asked if she’d be willing to sit down with me to write down the recipes she used for her father. That way, I wouldn’t have to fumble around trying to figure it all out.

“So you want a Huntington’s cookbook?” she said laughing.

I shook my head, laughing with her at the absurdity of the notion. Although one day we probably will create that cookbook, what we really hope for is a medication to help regulate metabolism in Huntington’s patients. Something to slow down the burning of calories or help with people’s ability to chew and swallow.

So, yes, Jill is right: It is ironic that we live in a society obsessed with weight loss while Jill is part of a community that is desperate for the opposite. We hope that, as medical science advances, people might understand that not everyone is fighting to lose weight. Some are fighting to keep it on.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.