Long-Term Follow-Up Study

A short summary of my pxe life

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. 

I attribute my diet, healthy lifestyle and positive outlook to be the key reasons behind my pxe remaining stable all of the years. 

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SBT's picture

Thank you so much for sharing! That's awesome -- and useful for us to know. 

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