PXE Veggie/Vegan Study

How does a vegetarian or vegan diet affect symptoms caused by PXE?

Many of you shared about your lifestyle as a vegetarian or vegan and how you believe it has impacted living with PXE. Can living a vegetarian or vegan lifestyle lead to fewer PXE related symptoms? We can use the PXE & LIFE data from PXEers to find out!

What questions should we focus on to create this study? What dietary practices do you think impact specific PXE symptoms?

Share your ideas here!

If you are interested in becoming part of the Veggie/Vegan Research Team to develop a plan for this study, email Eliza at eduvall@pxe.org and check out this page for updates!

Ideas (8 total)

Displaying 1 - 8

Balanced - mostly

JoAnn De's picture

When I was a kid we were pretty poor and our diet reflected that.    High carb, high fat foods.    As an adult I've eaten a mostly balanced diet.   Every night there is a carb, a protein and a veg.    I was never a fast food eater, and rarely drink soda.      I had my first bleed at age 42 and am now 54 with multiple bleeds in each eye (treated in the past with Avastin and over the past 2 years with Eyelea).   I test between 20/20 and 20/30 (corrected vision).

Quality of diet

Wagamama's picture

15 yrs vegetarian

Robyn Matthews's picture

I was diagnosed at 2 yo, and ate a typical meat & 3 veg diet until around 18 when I moved to japan and adapted to a typical Japanese diet of minimal meat, lots of veg and variety and fish. From 25 I became vegetarian and still am now at 40. 

I have skin lesions on my neck and in my joints, peau de orange, angoid streaks and vascular claudication. However, even after 2 children I have no stretch marks and have had no advancement of my condition since I was 20. 

 

Long tern pxe and vegetarian


Littlenatt's pacture

A was diagnosed with PXE when I was 25. I am now 61 years old. I work internatiofally and this means I have had fo consistent medical care. I have been a vegetarian for all of this time, and have always engaged in sport. I still run 10 km t`ree times a weec now. In additign to gym workouts.  I have the skin issues and lost sight in ofe eye, but have never let dominate my life. It as what it is. 4/p>

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Vegetarian before to be diagnosed with PXE
Beverley's picture
, has Pseudoxanthoma elasticum
Fri, 06/09/2017 - 06256 <'div>

I have been vegeterarian for almost 20 years now (eating fish). I start to be veg at 20, I was diagnosed at 30-32 I'm now 44.

I have been stable since, my skin, angroid in my eyes and leg pains. I saw on the facebook page, few become veg and they saw the change so I do beleive vegetarian diet has an impact somehow on PXE.

My vegan experience

animal's picture

I am or was everything a PXE'er should not be.

I smoked, was overweight (still am) and my excercise consisted of lifting the tv remote to change the channel!

I was diagnosed with PXE when I was 23, I am now 41.

I had no adverse symptoms of PXE except my lax skin on my neck, underarms and thighs. I had my first "bleed" in my left eye, with no event, no bump to my head, no falling off a bike etc. After my first, I had a couple more (one in each eye), again, with no accidents or knocks to the head.