This is a very interesting site. I plan on spending time doing a lot of reading here as participants seem to have a lot of interesting information that one could learn from.

I'm new here and stumbled upon this site when searching for info on porphyria. I am maternally descended from old European aristocracy/royalty and when reading about an ancestor I stumbled upon the mention of porphyria. Looking into it further I discovered that it just might be the explanation for some of the mysterious problems that seem to run in our family that doctors can't quite put a finger on. Myself, my youngest daughter and one of my nieces have an 'allergy' to the sun where we develop an itchy rash and sometimes little blisters usually in the beginning of the sunny season. After we get a bit of a tan the symptoms seem to fade. A good portion of my family are photosensitive and wear dark glasses year round out of doors, even on 'bright' cloudy days. My little one becomes extremely light sensitive when she has a cold/is sick and will literally cry and run to hide in a dark room as just normal lighting is blinding and painful to her eyes. Many of us have a history of unexplained stomach pains, and all that goes with that topic. My sister and my niece have been told they have fibromyalgia, yet drugs of any type rarely do much to alleviate their discomfort. We all get the unexplained tingling and numbness in our extremities, tho no one has ever become paralyzed by these symptoms. My sister and I both get the racing heart symptoms from time to time, yet the doctors say we have no heart problems that they can find.
I'm encouraging my sister and niece to be tested as they seem to suffer from the symptoms the most and to a higher degree and are more likely better test subjects than others of us within the family.
If anyone has ever come across any further information regarding this disease please post it, any info would be appreciated.