Through PXE LAB, Facebook, and email, many of you expressed interest in understanding your leg pain better – those calf cramps often caused by exercise for people with PXE. This is called intermittent claudication, which is one symptom almost everyone with PXE experiences but has not been widely studied.
Let’s design a study to figure out how to improve leg pain!
What “treatment” should be tested in this study? What do you think would lessen the pain of intermittent claudication? Running more often? Walking a few times a week?
Share your ideas and comment with what has worked for you!
If you’re someone affected by PXE, you can be part of this study. We want YOU to plan this study with us! If you are interested in becoming part of the Leg Pain Research Team to plan this study, email Eliza at firstname.lastname@example.org.