Could someone please answer this even if they dont know anything about it?

Question

I'm 13 and I have a disease/ condition called Erythropoietic Protoporphyria and so does my older sister. Shes the only other person i have ever met that has it. I have never met anyone else who has it or any other form of phorphryia. If you have it or know someone will you please answer this? And before you answer maybe read this:

http://en.wikipedia.org/wiki/Erythropoietic_protoporphyria

even if you dont know about it i would appreciate answers... or if you know a website that is trying to find a cure let me know.

Answer 1

(answer) that was 2 points for me! yes!

lol.

but srsly.



like emmiii said, it can apparently be grown out of. good liuck

Answer 2

Not trying to be ugly, but you really didn't ask a question.

Answer 3

It would probably be more helpful if you just Google it. The disease looks like it is hereditary and happens a lot in the western hemisphere. This is what i found in Google. Have a look........

http://www.emedicine.com/DERM/topic473.h...

Answer 4

I don't no what that is, and I don't know anyone that haves/has it, but I wish you luck.

Answer 5

i have a friend with a cousin who has it. i hear its not pleasant..i am so sorry that you have to go through all of this.i wish you the best.

Answer 6

http://www.thetole.com/ErythropoieticPro...

One of my cousins had it. She grew out of it though.

I'm sorry. And I'm praying for you.

Answer 7

im pretty sure you grow out of it

Answer 8

Have you checked out this website?  It has a lot of information.

http://www.porphyriafoundation.com/about...

This one discusses an idea that they've tested on mice:

http://www.ncbi.nlm.nih.gov/pubmed/10395...

And this one says in the last line that there is a cure for the congenital form now.  They're still working on EPP.

http://dermnetnz.org/systemic/erythropoe...

Answer 9

I don't know what it is, but it sounds nasty. I guess the only way to make it as pain-free as possible is to follow all the advice given by doctos and nurses.

Perhaps you can find a community online where people with this disease from all around the world join and share tips and ways to deal with it. You should ask your doctor if there are any groups you can join.

Other than that, I'm not sure how I can help you. Just keep out of the sun and do as your doctor tells you. I'm sorry I can't help you more; I'd never heard of it until I read your link. I'll keep my eyes peeled and if I see anything that can help you, I'll edit my answer.

Good luck, don't let it rule your life!

Answer 10

ask your hospital or start a website