Hi there,
just saw your question re Porphyria. My brother (now lives in seattle) has had it since he was a child. Severe reactions to sun and wind. swelling, pain etc. Parents thought is was a bad sun burn until he got blood confirmation years later. 2 of his children (in their 30's ) now have it. they have all been on an new experimental drug for a couple of years. actual and control placebo etc. it has worked amazing! his skin pigment has changed. are you interested in the name etc?
cheers

clive
vancouver Canada