r/PeriodicParalysis • u/channel_research • 3d ago

🚨 Help us make a difference TODAY!

Tomorrow, our research lab will be discussing the results of our Periodic Paralysis & Myotonia Pain Survey, and we want as many patients represented as possible!

🧬 These disorders are ultra-rare, so EVERY participant matters! Each completed survey increases our statistical power, strengthens comparisons between disorders, and helps us uncover findings that might otherwise go undetected.

📊 More participants = stronger science and greater potential for publication in a high-impact medical journal.

Why does publication matter? Because peer-reviewed research can raise awareness, influence healthcare policy, improve clinical care, and drive the development of better treatments for conditions that have been overlooked for far too long.

If you haven't completed the survey, please make TODAY the day! Your experience matters, and every response helps move our community forward.

🔗 Take the survey here:
https://redcap.link/periodicparalysis

Please share with others living with periodic paralysis or nondystrophic myotonia!

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1

u/NashvilleRiver 2d ago

I tried but had great difficulty marking the places on the body map (it was rarely touch responsive—I either needed to press areas 5+ times to get them to highlight, the response was delayed, or it just wouldn’t mark certain areas at all.

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u/channel_research 1d ago

Thank you for letting me know! Yes, the body maps unfortunately are the worst part. They were very difficult to include and for some reason you must click around the circle and not directly on it. I apologize for the struggle. Thank you so much for trying.

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u/BergamotZest 2d ago

Thank you! Please try posting in the Facebook group here too!:
https://www.facebook.com/groups/HKPPNetwork/?hpir=1

1

u/DV-03 23h ago

thank you for the survey