I have Porphyria, an inherited disease, anyone else have it, and what do you do to treat it?
Porphyria is actually a group of about eight disorders. They are all caused by abnormalities in the way the body produces heme, which the body uses to make hemoglobin and other important substances. Hemoglobin is the molecule that carries oxygen in your blood.
If you have one of the porphyria disorders an intermediate product (often something called porphyrin) builds up in your body. However, most people with these abnormalities do not have symptoms.
Some porphyrias cause acute attacks and others cause chronic symptoms. Attacks can be triggered by drugs, including barbiturates, tranquilizers, birth control pills, sedatives, and alcohol; fasting or smoking; infections, emotional or physical stress, certain hormones, and sunlight.
Nutrition is a factor, and sometimes patients may need to follow a high-carboyhdrate diet and avoid alcohol. Your doctor may recommend beta-carotene (found in orange and leafy green leafy vegetables).
Treatments include phlebotomy (taking blood), sun-protective clothing, injections of heme, removal of the spleen, and painkillers. (+ info
how can I tell if I have Porphyria?
I have some of the symptoms, but I dont know.
I have these symptoms:
Red urine, Sensitivity to sunlight, Pain in the back, Personality change, Photodermatitis. and I used to vomit alot.
do I have this disease
I'm not going to get it treated if I do have it. I'll be happy being what I am
Up front, I don't know anything about Porphyria. I am not a doctor, so I cannot tell you if you have this disease or not.
However, I checked out the sites I listed below and learned the following. Number 1, Porphyria is not just a single disease. There are 8 different types of porphyria. They have different symptoms. But in general, the symptoms I saw listed when reading match some of yours, namely: personality change, photo dermatitis, and the vomiting. Please check out the sites below. Then get to a doctor to find out for sure. This disease can be serious, depending on which type you have and its severity.
As far as the red urine is concerned, that can be caused by foods you eat and medications or other medical problems. I didn't see it listed in as a symptom of porphyria. (+ info
What is acute intermittent porphyria?
I have been suspected bout this diagnosis... Currently taking screening.. Well Dr never tell me what is all about??? Plus does it cure if getting it?? any treatment for that???
Hi Mercury, You will get all info about this disease on the following website:
You can also get more info from: http://www.porphyriafoundation.com/about_por/types/types01.html
Your doctor should definitely explain it to you if you ask him politely to. If you want to know more about it please read the above sites. I sincerely hope this helps. (+ info
How was porphyria discovered or identified. mainly acute intermittent porphyria?
please help, I can't find anything on the internet, maybe somebody can help
Hi! I have AIP and my mother did as well (the most severe case documented on record) - until it took her life in 1989. Diagnosis is EXTREMELY difficult for many complicated reasons- THAT, they won't be able to cut and paste from wikipedia! IF you are lucky, it will show up in a urine test (but usually won't unless you are in the midst of an "attack" OR your porphyria is "active" as it is usually latent or dormant between "attacks" if/until it worsens) if not they can do a stool test. In BOTH cases, it is unlikely they will show negative unless you are in the midst of an attack- AND YOU need to educate yourself on the proper handling/storage of the samples as they have to be sent to the MAYO clinic and if handled improperly will be invalid. The other way to diagnose is if you are hospitalized during an attack and respond to heme therapy. That's the way it goes unfortunately. :( good luck
uuuh oops- i read question wrong lol :P (+ info
Who discovered Porphyria? When was it discovered?
I need to find these answers for my project. =D I can't find them anywhere through googling. Anyone can help? ^^
write started a research project. The investigation followed two TV programs concerning "Georges III madness" (shown on Channel 4) and "Kings and Queens of England" (shown on UK TV history channel). The first one showed the link between Georges III and the porphyry illness. It also showed how far the illness could be traced. The second TV programme explained that since Henry VI, madness has always been connected in some sort to the English crown. From these two programmes, I wondered if the madness of Georges III could be connected to the one of Henry VI.
The investigation has not been enjoyable. Most of the information was missing or hidden in a few books. Most of the contemporary biographies were written in view of flattering current monarch. For example, Henry VIII biography was written when James I had just been crown. As he was a heavy sponsor of the arts, most artists did not intend to disappoint him. The other source of misinformation was the misdiagnosed of the illness. For example, the illness could be either diagnosed as madness as for Georges III or as evidence of poisoning. It is until recently that porphyry has been diagnosed for Georges III.
The research went on for a while with mixing with a day job. The idea to turn the research into a book came from a mate. He suggested it when trying to write his on Signal Processing. However, as life is too short, I have decided to put only a brief summary on line and see what happens next.
This page subject is a bit controversial as it has never been developed. The origin of porphyry could also have impact on the current English royal family. If the origin is up to Henry VI, his mother, who married the Tudor dynasty founder, could have been the carrier. However, if the origin is somewhere else or earlier, the importance could even be greater. The longer the illness has been rooted in the family, bigger the risk is.
The conclusions could be debated for a while. Many of you may disagree with them. However, I invited you to read my research update and draw your own conclusions from the finding. This page is primarily (but not exclusively) intended for future researcher as if its conclusions are correct, the illness origin can be traced up to the Medieval.
1. Georges III of England
1.2 Porphyria definitions
1.3 Illness' origin
2. Charles VI of France
2.2 Illness definition
3. The Search
3.2 The Stuart of Scotland
3.3 The Tudor
4. Further research
Back to the top
1. Georges III of England
1.1 Introduction For many, George III was simply mad and there is nothing else to say not to write about it. For other, he suffered from late stage of syphilis. The truth is far from there. His illness has been recently diagnosed as porphyry.
Contrary to general believe, Georges was not affected by his illness all his life. He was born in 1738 and became king of England and Ireland in 1760. At the time of his nervous break down in 1765, Great Britain has entered a turbulent period: wars against France, independence of USA, etc. His mental state was so affected in 1788-9 that, at this point, political discussion took place for the Regency. Georges III recovered the following year. However, contrary to what might be expected, he was loved by his contemporary people. He was also keen on knowledge. He had a large library that he donated to the country.
His illness resulted to various side effects. The most notorious one was hallucination: primarily sexual one. In one occasion, he attacked a pregnant Queen-lady-in-waiting. He also thought that he was poisonednote 1. After his relapsed in 1810, He was declared permanently insane and he did not recognise his own family. He died in 1820 without knowing or realising that his wife has died note 1. Another consequence of his illness was his urine colour that was described as pink.
His life is well documented. See note 1 for further readings as it is not the purpose of this page.
From his doctor's diary note 2, it is widely accepted that he inherited porphyria or porphyry. Usually, this type of illness is much minor than on George's case.
1.2 Porphyria definitions
From the internet, there are multiple references. I took one from the medicine libray. Porphyria is a group of at least eight diseases caused by abnormalities in the chemical steps that lead to heme production. Found mostly in the blood, bone marrow, and liver, heme is a vital molecule for all of the body's organs. Heme is a component of hemoglobin, the molecule that carries oxygen in the blood.
Genetic changes are related to the following types of porphyria. »acute intermittent porphyria
»ALAD deficiency porphyria
»congenital erythropoietic porphyria
»porphyria cutanea tarda
The signs and (+ info
how much affect upon porphyria does alcohol have?
my husband refuses to continue phlebotomy and consumes mass amounts of alcohol
Alcohol is bad for any one who has porphyria. It causes pains and can make you very sick (+ info
disease that makes you want blood? NOT Porphyria?
I saw it on a show once, i think it has vampire in it or something... but it makes people actually believe blood will bring them eternal life, and make them look young and all. Whats it called?
how one person get porphyria illness?
how one can get porphyria illness is it genetic or enviormental or other
The porphyrias are inherited conditions, and the genes for all enzymes in the heme pathway have been identified. Some forms of porphyria result from inheriting an abnormal gene from one parent (autosomal dominant). Other forms are from inheriting an abnormal gene from each parent (autosomal recessive). The risk that individuals in an affected family will have the disease or transmit it to their children is quite different depending on the type. (+ info
what causes porphyria?
who gets this and is it serious
The porphyrias are inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). They are broadly classified as hepatic porphyrias or erythropoietic porphyrias, based on the site of the overproduction and mainly accumulation of the porphyrins (or their chemical precursors).
In humans, porphyrins are the main precursors of heme, an essential constituent of hemoglobin, myoglobin, and cytochrome.
Deficiency in the enzymes of the porphyrin pathway leads to insufficient production of heme. This is, however, not the main problem; most enzymes—even when less functional—have enough residual activity to assist in heme biosynthesis. The largest problem in these deficiencies is the accumulation of porphyrins, the heme precursors, which are toxic to tissue in high concentrations. The chemical properties of these intermediates determine in which tissue they accumulate, whether they are photosensitive, and how the compound is excreted (in the urine or feces). (+ info
acute intermittent porphyria need 2 find some natural rem help?
Lämna ett meddelande om 'Porphyria cutanea tarda'
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