Porphyria Foundation

Yahoo Porphyria Group

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[dearvirg6]

Oh My Goodness ~ Finally I have a place. I have had PCT for 16 years. I am so surprised at how far information about the disorder has come. I am currently experiencing an episode and am so overwhelmed at knowing I can reach out to others. I am considering donating my body to science and was hoping to find a Porphyria Association. Time to get my affairs in order. Thanx. Ginny

[SuperEvilArtist]

I have AIP.

[moonbearwolf]

Thank you to Everyone Who Contributes To Help Those of Us & Those Who Help Contribute To Funding For Research. Thank You From Canada (O:

(Please Help Re-Open The Doors Of The Canadian Porphyria Association)

[almostseethru]

Interesting-you wouldn't by chance have any type of literature to back this claim, would you? The reason I ask is that a) I have porphyria, b) I'm always interested in academic research related to the subject (as I work in health care) and c) one of the treatments for an acute exacerbation is in fact IV glucose/a high simple-carb diet, so some would think it may follow that to reduce/cut-out dietary sugars could in effect, pre-empt an attack. Fasting certainly can.

[gerwin0]

which kind of porphyria mutilate your face?

[boomer76]

We did do a garden this year. I haven't worked in it much though because even though I have aip the sun still bothers me some. I did buy some UV resistant clothing and that has helped.

[porphyria2]

I drive a crap old car wear crap holey clothing sitting in a holey chair with holy shoe's, I have holy sheets and towels. I live in the hood and very poor except for the Internet and cable, guess I look very poor, someone tossed me a quarter when I was walking down the street and said buy a comb, so I did, but I use organics at the store. I remind myself substance is more important than appearance. Now I'm growing a garden finally. Sorry about your Chem exposure at work. Maybe a garden ?

[boomer76]

Unfortunately that's not an option everyone has. Me for instance. There isn't anywhere around my town that sells strictly organic foods. Not only that in the spring when the farmers are spraying well, it's not too nice to me. I'm also exposed to some chemicals at my job that midly irritate me but, I gotta put food on the table and in this economy I'm not chancing on finding another job just to lose it. I do some organics. It's helped some. The pain isn't as bad but, I still have it

[traxisone]

hi

im from germany and i have aip

[Bryan6446]

Im 18 and have erythropoietic protoporphyria, its painful. I get it from going into sunlight for more than about an hr, some weeks when I might spend too long in the sun, i will lie in bed with ice and fans going full blast and still be in so much burning pain i cant sleep, so spend days crying in bed for sleep which is the only thing that can help. when i was younger mum would come into my room to to comfort me, and one morning i asked, 'Why do you come into my room at night and hurt me mum?'