Squishy words, and that elusive cure for Rett syndrome

“Potentially.”

“Promising.”

“Could.”

“Might.”

“Possibility.”

These are some of my least favorite words. Why? Because they and an assortment of others turn up routinely in practically every press release about some incremental advance in Rett syndrome research. “This study raises the possibility that …” goes one. “The findings ‘hold promise for …’” says another.

A quarter-century ago, when my daughter Abby was found to have Rett syndrome, it was heartening and exciting to read that anyone, anywhere was working on the condition and how to treat or even cure it, and those types of qualifying words were synonymous with hope. Help for Abby might be on the way. 

But very little help has actually materialized in the long years since then, and the “mights” and “coulds” in those press releases now just have a numbing effect. The response in our household has gone from “That’s exciting!” to “Wake me up when you can tell me something definitive.”

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Don’t get me wrong, I understand that researchers have to be cautious and not overpromise, that companies have to protect their proprietary interests and patient confidentiality, and that science often advances in baby steps rather than great leaps. I bring up my annoyance with the waffle words only because I’ve lately been realizing that exposure to a quarter-century’s worth of them is changing where I come down in the Great Debate of Rettland: Will Rett syndrome ever be cured?

Occasionally, someone in one of the Facebook groups devoted to Rett syndrome posts that question. It’s a hardy perennial guaranteed to get a blizzard of responses, and scrolling through those responses can be illuminating and also a little frightening.

Some posters remain full of optimism that a cure is imminent, citing the recent start of genetic trials and other cutting-edge research. Others go off the rails into conspiracy theories — biotech companies or the government or both are faking research and doing something nefarious with the money devoted to it.

More reasoned replies express doubts that a cure is possible because of the difficulties in delivering gene therapies and variations in the mutation that causes Rett syndrome. And some of those wonder if too much research is focused on the home run of a cure and not enough is going toward less sexy treatments that might ease the seizures, dystonia, scoliosis, constipation, and other problems that come with Rett syndrome.

Read enough of these Facebook posts, and you get the sense that the “a cure is imminent” people tend to be caregivers of younger children, while the more skeptical generally are caring for older dependents, as my wife and I are. (Abby will turn 30 next year.)

I used to think a cure was coming, but now, thanks to years of being inundated with “potentially” and all those other squishy words, I am less confident. And given Abby’s age, it’s hard to imagine what a “cure” would even look like for her. Would Abby, nonverbal for almost three decades, suddenly be fluent in multiple languages? After decades of having very little purposeful hand use, would she suddenly be knitting and painting?

I still hope for a cure, of course, if not for Abby’s sake then for the sake of future generations. But it would also be grand to read a press release from some research lab that says, “Our new discovery will definitely, positively stop your daughter Abby’s debilitating dystonia” or “will absolutely, unquestionably eliminate your daughter Abby’s unexplained episodes of sobbing and screaming.” No waffle words, please.

Note: Rett Syndrome 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 Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.