Get the facts on Erythropoietic Protoporphyria treatment, diagnosis, staging, causes, types, symptoms. Information and current news about clinical trials and trial-related data, Erythropoietic Protoporphyria prevention, screening, research, statistics and other Erythropoietic Protoporphyria related topics. We answer all your qestions about Erythropoietic Protoporphyria.
Question: Erythropoietic Protoporphyria? I was just wondering if anyone else had epp or another form of porphyria as i have never met or had the chance to talk to someone else with the same condition as me.
Answer: My sister-in-law has Porphyria and it is HELL!! She has the hereditary form of it and will be going in for genetic testing to isolate the gene responsible. It is very worrisome because I am married to her brother and hope that it won't affect my daughters health down the road. It is a very complicated disorder but 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 upon the type of porphyria. When these poephyrins build up, it is very painful... many times unbearable pain. She is also very sensitive to light and must cover her skin when she goes outside. The American Porphyria Foundation has an excellent website at
http://www.porphyriafoundation.com/...
It took over a year for my sister in law to get a diagnosis on her condition first because it is so rare and second because some of her symptoms mimicked Lupus and M.S. Some nights she is so miserable that she can't move from the couch. I feel so bad for her. The genealogist in me wants to trace all the branches of my husbands family tree to find where this came from. I pray that one day they find a cure. You have my heart and my prayers. I know it isn't easy for you.
Question: Erythropoietic Protoporphyria A Real Life "Vampire's Disease"? I read a thing on the internet a while ago that seemed to suggest the existence of a real "vampire's disease". Obviously, beyond the realms of hollywood it doesn't cause the victim to transform into some fang-gnashing, blood-drinking supernatural creature. However, it does seem to suggest that the conditon could cause a shortage of iron, heme and certain enzymes in the blood. And also cause a great deal of pain, depression, high sensitivity and dislike of light, dillusion (maybe even convincing the person they are infact a vampire), intolerance to sulphur, and eventually death.
I was wondering if anyone who knew anything about phisiology and disease could shed any light on this.
I am studying A level biology so I understand a little, but nowhere near this amount of detail..
Answer: There are about 7 or 8 different types of porphyria, I think some of the symptoms you listed (delusion and other mental issues, sulfur sensitivity) are symptoms of other types of porphyria not this one. This is a relatively 'mild' version compared to some of the others but it is pretty painful?
This type of porphyria does cause some symptoms similar to 'vampire' myths though. Generally the main issues are sun/light sensitivity and occasionally organ damage. People get painful skin damage from sun exposure or even sometimes from bright lights indoors.
The enzyme levels in their blood can cause damage to the organs especially liver problems and gallstones/gall bladder damage. I think they don't generally get iron/hemoglobin levels low enough to be anemic but they do have to watch their iron intake to make sure they get enough or it can cause health issues.
There are some drugs that people with this kind of porphyria shouldn't take because they can increase their risk of liver damage. I don't know that sulfur or sulfa drugs (not sure they're the same really?) have any particular effect though. I'm pretty sure that is for people with acute porphyrias and not this particular kind.
Anyway, this kind is really only the light sensitivity and maybe the anemia if it isn't controlled. The sulfur sensitivity, delusions and death happen to people with different kind of porphyria. Basically if you put all the different symptoms of porphyrias together you can get a 'vampire' disease but I've never heard of anyone having more than one type of porphyria, its a very very rare condition.
Question: could someone please answer this even if they dont know anything about it? 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/Erythropoie…
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.
wrong catergory... sorry
im asking if anyone knows someone who has it or has it. or if they have a website trying to cure it.
i dont have the one that changes my appearence i have the one that is just on the inside
Answer: 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.
Question: What am I supposed to do? My mom is in Vegas with all of her girlfriends and I am home with just my dad for the week. I'm in marching band and we are doing a parade later today and I'm on my period. The problem is the uniforms are white pants with white underwear. My period is heavy and tampons won't work because we will be gone for ten hours. There is no bathroom to change pads/tampons. We are taking school buses, and there'll be no outhouses. We aren't aloud to have anything in our pockets and we can't bring any bags either.
Also, I have a condition called EPP (http://en.wikipedia.org/wiki/Erythropoie… and am very sensitive to sunlight. It is 70 degrees outside and yesterday I was outside all day and now my face and the back of my neck hurts and I am not supposed to be outside, but my dad is ignoring me when I tell him I am in pain and shouldn't do the parade because it will make it worse.
Answer: There are these great products called "Insteads" they are cup like diaphragm's and they work for up to 12 hours if used properly they are found at most large drug stores and i would swear buy them you can even swim in them check it out they are well worth it. PROMISE!