What is Porphyria?? (The Disease)

[themainman2008]

I have epp I am the only one in my family to have it, I accept my life will never be the same as the next man. take each day as it comes and enjoy what you can. Don't get your hopes up on the doctors fixing the problem for 1000 years

[6AXL66]

my mom passed away from lupus complications and i honestly think she had porphyria. im scared cuz im showing early signs of it too and im on medication for the rest of my life...

[364dianaa]

I have Porphyria Disease and I did not inherit it. You can get it from living in a toxic environment. I have lived near a fossile fuel plant, Kingston, TN, for 40 years. I feel that breathing in the burnt coal ash that blows from the dikes containing burnt coal ash waste and is discharged from the smoke stacks has caused this disease in our area. 13 out of 50 people tested in my area had the disease. Some of them were children.

[TheMartingilmour]

I know that most of you guys are saying this is inherited? if i'm right, but i've heard you can develop it somhow, anyone know what would make you develop it? By any chance?

[lladic2]

As far I know how ppl wrote about legend of the vampires. Since person with this disease porphyria was revealed on public, sadly ppl thought that person was vampire and they killed this victim.

Ppl never knew about porphyria before scientists and/or doctors discovered this disease.

For ppl with this disease, you are lucky borned in this century 21 and not killed from hunters.

[IchliebeGott21]

I was diagnosed with EPP Porphyria last summer. Apparently it runs in my family. We didn't know why we were having all kinds of strange reactions to medications, foods, the sun, and etc. It gives me me both cutaneous and acute problems, like a lot of muscle and kidney pain, I can't be out in the sun for more than ten to fifteen minutes at a time without getting what feels like the flu, I'm tired all the time and get stupid after sun exposure. It's not a very nice condition.

[Freedomquest08]

Thanks for posting this...(and increasing my anxiety). I'm dealing with an illness from long term exposure to some nasty carcinogenic chemicals at work.

I've had over $20k in out of pocket tests done over the past several months (now bankrupt), and just now starting to close in on this. Porphyria doesn't sound like the diagnosis I want to hear from my doctor.

Severe chronic illness is something people must experiance themselves to comprehend or understand.

Hope your son is doing ok.

[LillithDarkwraith]

i'm taking this new panhematin in daily injections and I'm finding that it works far better than the hematin ever did. I'm also taking 1,800 mg Gabapenten 4 times a day for the pain, seizures and mood control. I'm on a high carbohydrate diet and all of these things put together have been a godsend.

[frankenbat]

Variegate Porphyria runs in my family. I'm 39, been symptomatic since 13. It has destroyed my life.

I wish all the vam-posers would stop coming on here with the myth that it gave rise to vampire folklore. Anyone who knows the history of vampirism beliefs knows it has nothing to do with light sensitivity or living people with diseases.

Best wishes to your son. I hope he survives it as I have.

[chickenbutt321978]

OMG I eel a because the person's son is dying ofte propherya. I am fortunate to have my doctor catch it and currently being treated to keep it under some control.

[sara1363sara]

intresting..but why you said ... who is dying? i your son still fighting with the disease?

may be he recover...hum? keep hope....

[Lycantis1]

At least some people are aware of this disorder. I got sick of doctor's telling me the rashes on my face were from me rubbing my skin for attention, and got sick of people saying that my purple-ish red sweat was actually me not taking baths (I turn anything white that I sleep on or wear a purple/red color) and that I was doing everything for attention. I now stay out of the sun and take neurontin that I have from my grandma, it helps with the abdominal pains and vomiting, and mental disturbances

[thinkingman07]

Thanks for the solid info. I am interested to know what you have found out about lead poisoning and porphyrias and chelations therapy using EDTA. I read recent article in SPINE (2010) about EDTA being successfully used to treat lead poisoning. I wonder if it could help those suffering from this disease--if indeed lead is the cause.

[TheDarksEmpyrean]

my wife has been struggling for years, she has had nine surgeries in the past three years and is in constant pain. today, she saw a blood specialist and is having her tested for porphria. Until today, I have never heard of this. its pretty scary. Have you any idea if your son's protein C Level was very elevated? I thank you for posting this and educating me.

[BooteyMasta]

Maybe they should all pee in those Vamp "Twilight Movies?? That would be awesome!

[lilmsprincess1996]

isn't this also known as the Vampire Disease? i am just wondering :(

[Martin958]

Has anyone here researched into Chlorine Dioxide (MMS) treatment? See Jim Humble. Also Hydrogen Peroxide treatments?

[chichidood]

I appreciate your effort in making this video. My wife has had this for about 3-4 years. Lots of stress and anxiety over this for us. I read about it on wikipedia from time to time and never really got much from it. Your video gave me more understanding.

[PhilipJonTerry]

I'm a medical student. Thank you for the video.

[kym9932]

Know what you are going though, because I am black the Dr's refuse to believe that I have AIP. I have had urine samples that have been put in the sun & have seen them turn brown. I just have learned not to take any drug that I am not familiar with only eat foods that I make from scratch to avoid the attacks. If I start to go into an attack a half doz Krispy Kream donuts do the trick kinda like giving your heme system an electric shock. Hope you see this and take care.

[poetrygal1]

I am so sorry to hear about your son! Thanks for posting this video and spreading awarness...take care.

[parnmkie]

i feel for you all i suffer from

CEP:Congenital Erythropoietic Porphyria celiac and polycythemia: platelet

i hope your sun lives a long pain free life as i hope for my self talk to you later :)

[kasey172]

Get well soon! :)

[traxisone]

i have aip

[bsbeth91]

me too. sucks doesnt it?

[traxisone]

yes really sorry for my bad english :/

[bsbeth91]

no problem.

[bloodfledgeling]

i didnt know u die from this !! that is so sad..

[boomer76]

I have aip. So does my mother. My grandmother and her brother died from this disease.

[bipolarlex]

My urine goes dark red brown in the sun... I have to see my GP today, but my psychiatrist thinks I have porphyria (not sure which type).

[deathbyporphyria]

how did it turn out?? It would really help.

Sincerely, Alberta

[OBooHoo2]

I have actually given a urine sample before and it looked like a cup of strong black coffee. So sometimes a porphyrics urine need not ever be exposed to the sun. I guess it depends. At any rate, this is a horrible disease and we need a cure and soon. Thank you for this video...

Jackie

[deathbyporphyria]

Thanks..

[deathbyporphyria]

You are so welcome..

[JennerPatton]

I'm 38 and never been in chronic pain until now. I've been in the hospital 3 times in the last two months due to abdominal pain and weight loss. 2 exploratory surgeries and found nothing. I tested positive for Porphyria and having a hard time finding resources. Anyone out there with advice or help is greatly appreciated!

[fitzg7]

@deathbyporphyria

Check out this new book on Porphyria:

Porphyria: The Ultimate Cause of Common, Chronic, and Environmental Illnesses. With Breakthroughs in Diet, Supplements, and Energy Balancing, 2nd Edition

[fitzg7]

@fitzg7

it's at

wellatlast dot .com/whatsnew.html