Mon, 08/21/2017 - 19:17
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.
I was a lacto-vegetarian for a few years in my 20's. In the past year, I experimented with a plant-based diet that is near vegan with a small amount of dairy and eggs. More recently, in concert with my doctor's advice, I am following a gluten-free diet that is also largely plant-based (so a little dairy and meat). Initially, I noticed a surge in health after adopting a plant-based diet; however, I had some health conditions that were unresolved - and unrelated to typical PXE symptoms. These symptoms have resolved or been reduced with the removal of gluten from my diet. I'm not suggesting that gluten is an issue for everyone, but that it is important to determine whether there are food groups that your body does not tolerate well - as these may aggravate autoimmune or other health conditions. The jury is still out as to whether this diet will stem the progression of my own PXE, but my sense is that if I feel better, it seems to help some more immediately detectable issues, and it is healthy, then it can't hurt.
Of course, this is an entirely anecdotal and unscientific account, and my test period is short. Which is why a study of diet across the entire group is so important. I look forward to learning more from the researchers, and happy to contribute.