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 Nutrition

Ideas (6 total)

Displaying 1 - 6

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!

Best,

Sharon

PXE

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.

Tuan

Nutrition & Exercise

Mary-Elizabeth Garcia's picture

I try and follow a balanced diet to maintain a healthy weight and keep my blood pressure and cholesteral in check. I have blocked femoral arteries and take Plavix. My main form of exercise is walking. I walk and walk and walk.  According to my vascular surgeon, the walking has enabled my body to "create its own bypass" which assists in my circulation. My left foot still gets numb while walking, usually after one mile. But there was a point where I could not even walk a very short distance without numbness and pain.