Long-Term Follow-Up Study

Every single person with PXE experiences the disorder differently. Because of that, it’s very hard to know if one person’s change in diet/exercise will affect another person with PXE. In order to better understand the progression of PXE we need to know where we are now. This study seeks to evaluate a group of people willing to participate in a long term study of PXE symptoms. If you have PXE, you can start by completing our PXE & LIFE survey!

Please share your thoughts, ideas, and questions on the Long-Term Follow-up Study and check out this page for future updates! If you are interested in becoming part of the Long-Term Follow-up Study Research Team to plan this study, email Eliza at eduvall@pxe.org.

Ideas (2 total)

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A short summary of my pxe life

Robyn Matthews's picture

I was diagnosed at 2 yo, and ate a typical meat & 3 veg diet until around 18 when I moved to japan and adapted to a typical Japanese diet of minimal meat, lots of veg and variety and fish. From 25 I became vegetarian and still am now at 40. 

I have skin lesions on my neck and in my joints, peau de orange, angoid streaks and vascular claudication. However, even after 2 children I have no stretch marks and have had no advancement of my condition since I was 20. 

Questions for the PXE Community!

SBT's picture

Hi everyone! My name is Sophie. A couple months ago I posted this idea (https://mosaic.ucsf.edu/pxe-research/lab/idea/86) to PXE Lab -- and I got great feedback in the comments! This and other ideas have since grown into the Long-Term Follow-Up Study premise, and I'm so excited to get started. We look forward to getting any and all feedback from you, and particularly feedback regarding the questions I've posed in this post -- please click on "Read More" below to see the entire post. Thanks!!