What is it like to be a patient with this disease?

It is the most mind-numbing thing ever. Luckily my wife knew how to deal with it, so when I had my fits we could handle it. It’s scary too when my doctors just print things off the internet.

What is a day in your life like?

I have to stay inside. I live in South-East Georgia, so the sun just beams down. Our whole house has to be blacked out. Most of the day is spent inside, trying to figure out a diet for the day. It’s not a lot of fun. It feels like everything is based on what I can do to prevent an episode.

I heard some artificial types of light do not trigger symptoms. What is your experience with that?

Well we have shades on all of the lamps in our house and so they don’t seem to bother me so much.

What would you like the experts of this disease to know?

There are a lot information sources on diet. It’s difficult to get information on how to prevent information because the information is so inconsistent.

What would you like to learn from the experts?

I would like to learn how to get into a daily routine of diet, exercise, medications. I really wish that there was a handbook.

Do you have any tips for other patients?

The biggest tip is a diet. You really have to watch what you eat, watch out for sunlight, do what you can to prevent an episode.

How does diet help with your condition?

Porphyria is triggered by not only the sun, but also other things. Episodes can result from alcohol and drug abuse, and from certain foods.

Where can patients learn more? Resources?

Specialists are good. I actually go to the british porphyria foundation, and there’s diet information, recipes, lifestyle tips, and a forum. It seems that the disease is studied pretty well there.

How old were you when you were diagnosed?

I did not show any symptoms until my early 20’s, and I’m in my mid-30s now. I wasn’t diagnosed with it until late last year.

Do the ruptures and injuries from Porphyria ever heal?

They do for me. Earlier this year, I had gone to Vermont. We went to a farm and I didn’t bring a hat. The sun was just beaming and lesions appeared everywhere. It set me into one of my attacks. It seems that it lasted for about a week. But I still have some rough patches from that.

Can you describe what the attacks are like?

Well one thing that I can remember is that there are moments where I have complete confusion. For example, I may begin contemplating the difference between plant bones and animal bones, which is ridiculous, since plants don’t have bones, but in my mind, that makes sense. It’s just irrational thoughts, and as soon as it clears up, it feels like I can’t remember much. And all this is happening while lesions appear on my body, and the attacks are followed by the dark urine.

Do you have any final thoughts?

The thing that I’m most worried about is my daughter inheriting this disease from me, since my symptoms did not show until my 20s.