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.

Comment on one or both of the following questions.

  • What nutrition and exercise choices do you think make a difference as you live with PXE?
  • What have you been told about nutrition or exercise because of your PXE?

“Like” someone else’s comment to express support for an idea you like and think is useful.

Share ideas about nutrition and exercise living with PXE.

For more information on PXE LAB, visit our community page!

Ideas (13 total)

Displaying 1 - 10


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. 


exercise recommendation

nini's picture


Hi I am new to this forum, I have extremely weak muscles, legs feel like lifting stone to lift and very sore - just had my heart and eyes checked and so far so good - my doctor recommended I start excercise, I have booked into a pilates class this evening - do you think I will be ok to do this?? or should I start by walking first? really confused and scared scared to start because of the pain I am going to feel after.

PXE study idea

SBT's picture
Hi everyone! I'm Sophie and I'm about to enter graduate school for public health. Both my dad and my aunt have PXE, but their lifestyles and the progression of their disease are quite different! I was surprised to learn that there haven't really been any formal studies that characterized the role of exercise and overall nutrition on PXE.

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!



Frozen Shoulder

Samantha Goldman's picture


I have PXE and was diagnosed in my 30s.  I am now suffering with my second frozen shoulder.  I am wondering how many other PXE'ers have experienced frozen shoulder and whether this is connected or an anomoly.  Due to previous retinal bleeding I am not taking any anti-inflammatoeies or pain killers so living with chronic pain isn't fun!  Anyone else suffer frozen shoulder and how did you cope with the pain?


Tuan To's picture

I were diagnosed with PXE in the 1980's . Now I am 61 years old and fortunately, my PXE condition is under control.

I am checking amsler grid daily and check up every year with my opthalmologist. I am watching my diet and daily exercise - 40 minute brisk walk at lunch time and 30 minutes of stationary bike and elliptical after work. My plan is to burn at least 300 calories with walking and exercice per day. I do indulge myself with eating out occasionally.


stopping intense exercise may help reduce bleeds

Alex's picture


I had been exercising intensely for the past 10  plus years and had to have frequent shots of avastin.  I began to wonder if the types of exercise I was doing were contributing to my bleeds so I stopped very intense ab exercises that seemed to pump blood into my head.  I also stopped doing yoga with my head below my heart.  This seems to have helped as I haven't had a bleed in almost a year.  Now the challenge is to keep motivated with my new, less intense exercise routine.