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.

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. So here are my humble thoughts!
 
It looks like many of the ideas on this discussion page center around patients' positive anecdotes about maintaining a healthy diet and exercise regimen as part of an effort to keep PXE and its associated effects under control. I think a general, baseline study on the effects of nutrition and exercise on PXE would be valuable and would pave the way for future, more specific studies. The broad hypothesis that nutrition and exercise play a role in slowing down progression of/potentially reversing PXE symptoms is compelling because PXE, which may be a metabolic disease itself, shares many similarities with other chronic, metabolic diseases (such as diabetes, cancers, hypertension, metabolic syndrome, and cardiovascular diseases) that have been shown to be affected by nutrition and exercise. 
 
I think a potential study approach would be:
1) Develop an patient interview with questions about the severity and number of their symptoms, what they eat, what nutrient supplements or medications they take, how much they exercise, what other diseases/conditions they have, and other factors that could play into access to food and exercise, such as socioeconomic status. 
2) Measure patients' height, weight, blood pressure, any quantifiable PXE symptoms, and other relevant characteristics
3) Possibly collect biological samples so that epigenetic or genetic markers may be identified.
 
I think this would be a very feasible study to carry out in the short term (maybe a longer-term study could be a longitudal cohort one), as PXE International already has a survey and biobank in place with hundreds of reponses/samples from PXE patients, so a lot of our data could come from there.

 

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Anne's picture

I think continued studies on PXE brings awareness to the condition and that is a good thing.  What I understand that may be difficult is that people with PXE have varing degrees of symptoms, some do not even know they have it, and others need skin graphs due to disfiguration of the skin.  

Because this disorder mimics conditions like diabetes and heart disease I do not think it is unreasonable to assume that a healthy diet and moderate exercise is a bad thing for people with PXE.  As of course it is good for a human body in general.  Another variable to pull out is the role of maintaining a healhty weight throughout the life cycle.  Of course excess weight causes all sorts of comorbid conditions in the general population.  So question would be: what percent of those with PXE have symptoms and degree of severity, and what is their weight status throught their life so far? 

Good luck with you study and thank you!

 

Sharon Terry's picture

These are terrific comments.  Thank you so much for your input. We will factor these in. We are about to shift into a new phase here to start to craft the actual trial.  Stay tuned!  Keep it coming!

kiwi's picture

I too would be very interested in this.  I have often wondered if vegertarians would fare better with our disease or if all the supplements I take that cost a fortune are just producing expensive urine?  As for weight and excersice I think thats a "no-brainer" for the entire human race.

Cheers

 

Stacey Mokalis's picture

I am really interested in what  you suggested.I am  rather unlucky  as  I live  in  Greece and  things  are limited  as  concerning  health issues.I was  surprised  to  find  out  that Afrikaners  have  more  chances  of  having  pxe as  I was  born in  South Africa!!I would  readily  offer  any of  my  experiences  as  regarding  the  development  of  pxe.I was  diagnosed  at  the age  of  five  in  South  Africa.

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