Porphyria - Sunlight changes urine's color

[Abercrombieand1Bitch]

Apperntly there's a cure on the Youtube channel Porphyria2

it's not mine

[Ty79525]

prego its in there ;)

[frankenbat]

What type does your son have? Does he take precautions for his type? There's a list of foods and drugs I can't ingest, and I have to wear an all-leather outfit just to go grocery shopping, and I spend most of my time in my room, with triple black sheets over the window and nothing but green light. It sucks, but it's better than dying during a seizure I could have prevented.

[Darkmysticdream]

I suspected porphyria when I was a teenager with the medical issues and extreme light sensitivity I had, but never thought it was a legit diagnosis for myself because of the fact my urine was never abnormal colored when I went to the bathroom and docs never listened to me when I told them that my symptoms were similar. Recently found out about this test (now 10 years later)...sure enough mine went to a dark tea color within an hour of being in direct sunlight. Now back to the docs for dx!

[RamblinJMan]

So, how long should you leave it in the sun? Mine turns dark brown about the middle of the day after I put it in the sun. What about bacteria just from leaving it outside? Can that change the color? Does the urine change color at all for people without porphria if its left in the sun?

Any feedback would be greatly appreciated.

[yonigga223]

You've got to get a urine sample DURING an attack. Have him admitted and cathed so they can catch it.

[ty42420]

prego it's in there

[BooteyMasta]

This guy has way too much time on his hands if he goes around hanging bottles of Pee in his yard!

[scarletdaisies]

@BooteyMasta

This is a smokescreen to create an argument to discourage the real topic. The real topic is his boy might die if he's not given the correct medications or preventions. He needs to call his local legal aid and sue the crap out of the manager of the facility or hire a private detective to collect data on him. Someone who abuses their power like this will leave a trail of other offenses, so it should be easy to get something on him/her.

[niltsirk]

I have this thing too, the pain is awful during attacks :S but gladly no skin rashes.

[yonigga223]

@niltsirk are you taking your glucose and hematin?

[poetrygal1]

How long do you leave the sample outside in the sun, a day, two days? The lab messed up my urine test a few times...and my urine did change color when I tested it myself. But the doc said the lab finally did the test correctly and it came back negative. I am still trying to get a definitve diagnosis, and I do not know what to think?????Suggestions?

[Turbocane]

There is no cure for Poprhyria. I have been diagnosed for 12 years. I have VP. The only thing I do is avoid certains meds and never fast. Alcohol and drugs are to be avoided also. HCP may be different but the only treatments for mine are a gluclose drip or hematin while in an attack. They won't cure the disease.

[bipolarlex]

I probably have porphyria- my urine turns red brown in the sun and I have much of the other symptoms. I didn't know it was deadly (I know that I feel very sick and weak and have been puking a lot lately)... please tell me how deadly this is! Lex

[yonigga223]

@bipolarlex For one thing you're probably dehydrated. You've probably also got chronic uti's and costovertebral tenderness.(pain in your lower back during percussion.) Pee in a jar during a painful attack. Put it in the sun. If it turns purple, guess who's got porphyria?

[boomer76]

I was recently diagnosed with AIP. My urine has turned purpled because of the disease. Who is it that refuses to acknowledge your son's condition? The jail staff or your son's doctor? If it is the jail staff then what you should do is file a civil suit and supena his doctor for testimony.  While he is incarcirated it is likely the county/state prison that will be liable for his medical bills. Perhaps that's why they won't admit it.

[JBsBgstFan]

I have porphyria also. I can vouch!

[deathbyporphyria]

How did you find out you had porphyria what tests were performed?? My son is dying because they refuse to acknowledge he has porphyria because he is in jail and they do not want to take care of him. He has had 4 positive urine tests for porphyria HCP and Delta ALA but they refuse to use it. My mother died of porphyria when I was 10. I saw her die. She asperated.

[Abercrombieand1Bitch]

@deathbyporphyria

videos kinda gross, but you're stories really sad. I'm sorry to hear that your son is dying. May God bless you, your wife, and your son.