PXE LAB

PXE International promotes research that is driven by, and centered on, people affected by PXE. PXE LAB is a forum for PXEers and researchers to brainstorm, collaborate, and develop a research study on nutrition and exercise.

Ideas tagged as Treatment and Cure

Ideas (2 total)

Displaying 1 - 2

New treatment for PXE

Jazztune's picture

I found that in the Netherlands they have discovered a very effective treatment for pxe. See this article: https://tech2.org/netherlands/umc-utrecht-discovers-treatment-for-rare-disease-pxe/

Also, pxe people should begin taking Vitamin k2 Mk7. Must be this type of vitamin K. 100-200mcg a day. Get pxe doctor advice. This vitamin takes calcium from arteries and puts it in your bones. Very effective. 

 

What would you like to study in nutrition and exercise?

Sharon Terry's picture

Hi all,

OK - let's imagine we are going to study whether or not PXE is affected by diet and exercise? If you could measure some movement or exercise and see how that impacted your experience of PXE, what would you measure?

If you wanted to chart what you eat - what do you think makes a difference in how your PXE progresses?

I look forward to your thoughts!

Best,

Sharon