Porphyria Awareness Week

[Flamin'Flamingo]

April 17th till April 24th is National Porphyria Awareness Week. You are all probably thinking "What's Porphyria?" and that is why there is now an Awareness Week for it.

Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other. A common feature in all porphyrias is the accumulation in the body of porphyrins or porphyrin precursors. Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends on the type of porphyria. Porphyria symptoms arise mostly from effects on either the nervous system or the skin. Effects on the nervous system occur in the acute porphyrias (AIP, ADP, HCP and VP). Proper diagnosis is often delayed because the symptoms are nonspecific. Skin manifestations can include burning, blistering and scarring of sun-exposed areas.

(APF website)


There is no cure for porphyria, and no real treatment. The only thing you can do is treat each symptom seperately. The American Porphyria Foundation are in the process of scientific experiments to try to find a cure, or atleast a medicine that will help.

Doctors believe that I have Acute Intermittent Porphyria (AIP). To get a full diognosis I have to go to they Mayo Clinic, which I am saving up for right now. Acute intermittent porphyria is the most common form of acute porphyria in most countries. It may occur more frequently in northern European countries, such as Sweden, and in the United Kingdom.

The exact prevalence of porphyria is unknown, but it probably ranges from 1 in 500 to 1 in 50,000 people worldwide. Overall, porphyria cutanea tarda is the most common type of porphyria. For some forms of porphyria, the prevalence is unknown because many people with a genetic mutation associated with the disease never experience signs or symptoms.

(http://ghr.nlm.nih.gov/condition=porphyria)

Porphyria is very hard to live with, and makes daily routines hard to do.
Please learn about Porphyria, and spread the word.
To learn more, go to the American Porphyria Foundation website :http://www.porphyriafoundation.com

Thank you for taking the time to read this, and please spread the word for the next week about Porphyria, the only way scientists and doctors can find a cure is if people are aware of this disorder and donate to the foundation.



(Porphyria has appeared on the shows House, and Grey's Anatomy)






(Jessie said this is ok to go in General).

[somerandomkidmike]

Thanks for posting. This is definitely something people need to know more about. Overall a very thorough post. Before today, I had no idea what Porphyria was.

[BabyIndia]

Me either tbh, good information, are there any ways I can show my support?

[Flamin'Flamingo]

Originally Posted by BabyIndia

Me either tbh, good information, are there any ways I can show my support?

On the American Porphyria Foundation website, you can actually sign up to be a pen pal with a porphyria patient, but to do that you have to pay the membership fee (the fee goes to helping find a cure). That's one way you can show your support, Also, because this is Awareness week, just put a little note about it on your facebook status, twitter, etc. I hope this answered your question

[BabyIndia]

Thank You, I shall look into it

[amandajustine]

i will look into it. i will be informed and good luck with everything i will show u my support

[Boxy]

Well, hopefully after some more tests you can find out for sure, and learn to deal with it.
I hope it all goes well for you!
I'll be sure to spread the word...

<3 Liz