Sleep and pain, the hidden connection

In this presentation, Heloise Hoffmann shares her study focusing on understanding the relationship between FSHD, sleep, and pain. Sleep is essential, but it could be affected by FSHD. To confirm this link, Heloise conducted a survey of FSHD Society members regarding self-reported sleep quality and daytime sleepiness in the largest sample surveyed to date–some 700 individuals. Here she discusses her research process, findings, and implications.

Heloise is an FSHD patient who feels passionate about activating the community to join the march for a cure, and this led her to found the Southwest Florida Chapter and take part in an initiative to maximize youth involvement. She strives to get involved in science and research for FSHD. In addition to the sleep study, she has worked in the laboratory of Dr. Angela Lek at Yale University.

You can download Heloise’s Sleep Study and Survey and take the survey to see if you might have any significant issues with sleep quality.

To score the surveys

ESS Scoring

1. Add up the numbers corresponding to your response to each question.
2. You’ll get a score between 0 and 24:
   1. Score≤10 = typical daytime sleepiness
   2. Score>10 = excessive daytime sleepiness

PSQI Scoring is very complicated. Heloise recommends simply tracking changes in your responses rather than trying to calculate your score.