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.

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

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Greg Hale's picture

Based on research posted by PXE, International, the etiology of PXE is genetic and will ultimately impact the sufferer.  This considered what will a study that looks at diet and exercise expect to learn that will have any impact on the disorder?

4juls's picture

If doing a study like this found that eating paper every day or doing cartwheels everyday, prolonged my thus far unaffected eyesight, I think I would do it. 

Alex's picture

Coronary calcification is impacted by diet and exercise.  The problem with blood vessels that are calcified is that they contain cholesterol that can break off and form a clot.  If you have less cholesterol building up then it will be less likely to break off.  Also, exercise creates alternate pathways for the blood to flow and keeps arteries somewhat more flexible.  Although my cholesterol was "good" when i changed my diet it became great.  LDL and HDL are both in the mid 70s. So while exercise is important for everyone, it's crucial for us.  

kiwi's picture

I would be keen to know if pursuing a vegetarian diet would be of benefit to us?.  Is anyone in the group a vegetarian and has that slowed the progression of the deterioration of their vision loss or any other factor conrcted to PXE?

Cheers

 

  

 

Cathy Mckenna's picture

I am a  vegetarian , do  Pilates three nights a week and yoga two days a week. I walk 5 to 7 miles daily. I will be 66 years old next month I am in excellent health except for my eyes siGht!

Anne's picture

I follow a vegan diet. My goal is to not eat a modern Western diet that has been shown to promote heart disease, type ll diabetes, and obesity.  If I can keep my blood vessels from forming plaque scarring it has to be better for reducing the expression of my PXE.  

I also, exercise aerobically each day and have since I was 12 years old.  I also think this has to help, simply because there are so many benefits to exercise.  I lift weights to keep as much muscle mass as possilbe as I age however was told not to lift heavy weights, I suppose for the spikes in blood pressure that heavy lifting can cause.  

Never the less I too have lost vision in my left eye after 6 years of quarterly shots to my left eye.  That said I am otherwise very healthy.  

A Healthy lifestyle is a positive detractor from developing many chronic diseases so it does sound plausable that eating healhty and getting adequate exercise could help those suffering from PXE as well.  Who knows what I would be expereincing if I had not been such a "health" nut.

I would welcome a study on diet and exercise to see if it can help or prevent the expression of some or all of the symptoms of PXE.  

Christi M's picture

I would love to see a study that narrowed down the most effective exercise plan and nutritional guidelines to remain healthy.  Permanently disabled I have plenty of time to participate in testing.  I'm a physically fit woman who is still fully sighted.  Diagnosed 32 years ago.  Streaks have not changed.  Age related reading glasses are my only nemisess.

Stacey Mokalis's picture

Has  anyone considered how  important psychology is  in  the  progression  of  the  disease?Whenever  i  am  stressed I feel  my  pxe  gets  worse.My  eye problem  occured after a  very  difficult period  in  my  life.I  had  no  problems with  my  pxe  (except  skin  wrinkling ) until  i faced  a  very  serious  psychological problem.Has  anyone  experienced  something  similar?

Alex's picture

How about a long term study of people who have low cholesterol and who are exercising 100 to 150 minutes a week (cardio over 120 bpm)?

Jack's picture

Has there been any research to explore if gut bacteria have any impact?

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