13 - 1q21 Muscle Cramps Newsletter


Dear 1q families,

As you may remember, based on questions we received from a number of families, we developed a survey to learn more about the muscle cramps you have reported for your children. It appeared that muscle cramps occurred more frequently in young children with the 1q21.1 deletion.

In the initial survey, families reported that massage, stretching and over-the-counter pain medications helped to relieve symptoms. To learn more about other treatments you have tried, we asked you to complete another, more detailed survey.

Based on the responses we have received, for both deletion and duplication families it still appears that massage/stretching and over-the-counter pain medications are the most frequently used treatments. These also appear to offer the most improvement of symptoms. A number of families reported that the use of heating pads and physical therapy has helped, as well. The complete results from this survey are attached and posted on the website.

  • NOTE: Results have been separated for deletions and duplications. Please make sure you are looking at the correct data for your family. 

Thank you for helping us to learn more about this issue; please let us know if you have any additional questions!

All the best,
The Simons VIP Study Team





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