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The New York Times: ‘Dwarf Pride’ Was Hard Won. Will a Growth Drug Undermine It?

By Serena Solomon

It’s a question many parents of children with dwarfism have contemplated: If a medication could make them taller, would they give it to them?

Now, that possibility is becoming less hypothetical. A study published this weekend in the journal The Lancet found that an experimental drug called vosoritide increased growth in children with the most common form of dwarfism to nearly the same rate as in children without the condition.

The study has raised hope that the drug, if taken over the course of years, can make life easier for those with the condition, known as achondroplasia, including the distant prospect of alleviating major quality-of-life issues such as back pain and breathing difficulties.

But the drug has also ignited a contentious debate in a community that sees “dwarf pride” as a hard-won tenet — where being a little person is a unique trait to be celebrated, not a problem in need of a cure.

“It doesn’t totally restore all of the growth, but it does make a pretty significant dent in the difference,” said Dr. Eric Rush, a clinical geneticist at Children’s Mercy Hospital in Kansas City, Mo., and an associate professor of pediatrics at the University of Missouri, Kansas City.

He was not involved in the vosoritide trial, but has consulted for BioMarin and is involved in trials for a similar drug.


Read the full story via The New York Times

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