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 (9 total)

Displaying 1 - 9

Plant-based diets, food sensitivity-identification, and PXE?

JessF's picture

I have PXE and have been really interested in learning how diet affects the condition.  So, I'm glad that researchers are exploring this question.

I have PXE (skin symptoms first appeared at age 18, and I am 40 now).  I have angioid streaks in my eyes,  but was told by my opthamologist that my condition has been stable over the past few years.  

I am pretty fit, run, eat a healthy diet, chase my 2 kids around, and maintain a 3/4 time job, but with some pestering health issues beyond the typical list of PXE concerns.

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

I have been vegetarian and vegan for years.  I have better eye outcomes when I eat vegan and many vegetables, limit oils and fat, and maintain a lower weight.  Unfortunately for me, the cookies and ice cream and french fries version of the vegan or vegetarian diet doesn't help me much.  A study might want to have a qualitative component, since it is quite easy to be a "junk food vegetarian".  My retinologist noticed a difference with the lowfat vegan diet (unprompted, he said, "keep doing whatever you are doing".) Did I?  No (with lousy results), but maybe I will now.

Diet Concerns With PXE

Dabblecat's picture

I was diagnosed with PXE in 2006 at the age of 49. I went to bed one night and woke up the next day and had color negative vision in one eye. A portion of my retina had been blown away by a major bleed. Three months later, I developed a cataract in my other eye and after the surgery to remove it, started having bleeds in that eye.

I grew up in South Florida, where I had a diet very rich in seafood and fresh fruits and vegetables. At the age of 6 I moved to Houston and then consumed a diet of beef and potatoes and processed foods. In my 20's, I returned to North Florida and lived a very stressful and a labor intensive life. My diet consisted of fast and convienient food, and it seemed like I lived on Pepsi. By the time I was 40 I was suffering from severe osteoarthritis and had chronic widespread body pain. After a car accident I was left with debilitating neck and back pain. Doctors did nothing to help me so I started researching pain and went on an anti-inflammatory vegetarian diet. Exactly three months after starting the diet I woke up blind in one eye. It took the doctors three more months to figure out I had PXE. Since the diagnosis I've tried many different diets and so far the only things I've discovered is there are certain foods that within minutes of consuming them I can see a bleed start in my eye, for example, I seem to have a problem with Omega 3 fatty acids. If I eat something with olive oil I see the bleed start in my eye, if I eat collard greens, I see it start as well. I can eat butter with no bleeds but it fogs my vision out, I can eat the "banned" trans fats with no problem in my eye. I have found that Vitamin C and citrus bioflavonoids lessen the fluid in my eye. This is just a few of the examples I have found with food.

When initially researching about PXE on the web, I read a study that said "proinflammatory cytokines MAY help regulate PXE." So I feel my vegetarian/anti-imflammatory diet may have worsened and inflicted my legal blindness. I now try and eat a balanced diet slightly higher in lean protein. I also had, for many years steroid injections in many different joints, now I just suffer in chronic pain and try to keep the fluid and bleeds to a minimum in my one eye. So is being a vegetarian good? I feel my eyesight was lost due to a vegetarian diet. But we as individuals will all have different experiences with this.

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 picture

I was diagnosed with PXE when I was 25. I am now 61 years old. I work internationally and this means I have had no consistent medical care. I have been a vegetarian for all of this time, and have always engaged in sport. I still run 10 km three times a week now. In addition to gym workouts.  I have the skin issues and lost sight in one eye, but have never let dominate my life. It is what it is. 

Vegetarian before to be diagnosed with PXE

Beverley's picture

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.