For families exploring growth hormone therapy for loved ones with SYS, a 2021 study by Hebach et al. offers helpful insight.
Growth hormone (GH) has long been used to support height, body composition, and development in individuals with Prader-Willi syndrome (PWS), and based on those benefits, clinicians are now prescribing it for some individuals with SYS as well. While the potential benefits in SYS have been promising, data on its effects have been limited—until now.
In this retrospective study, families of 26 children with SYS completed questionnaires and shared growth data to help researchers better understand how GH therapy may impact this population.
For the 14 individuals who received growth hormone therapy, treatment began at an average age of 2.7 years and was generally well tolerated—no participants had to stop or interrupt therapy. The dosage used was nearly identical to the recommended dose for individuals with Prader-Willi syndrome.
The results were encouraging: children who received recombinant human growth hormone (rhGH) showed significant improvements in height and a decrease in BMI within six months of starting therapy. Treated children were also taller on average than those who hadn’t received GH.
Beyond the numbers, every parent reported increased muscle strength and endurance, and many observed gains in cognition and motor skills.
While this is an early study, it adds to growing evidence that rhGH could be a helpful therapy for some individuals with SYS—and highlights the need for additional research to guide clinical care.
If you’re considering rhGH therapy, we encourage you to speak with your medical provider and review this publication as part of that conversation.
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