FAQ - Porphyria, Variegate
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What is Porphyria? How long can a person live with it?

PORPHYRIA refers to a group of disorders that result in a buildup of chemicals called porphyrins in your body. Although porphyrins are normal body chemicals, it's not normal for them to build up. The cause is usually an inherited mutation.

Porphyria typically affects your nervous system or skin or both. The specific signs and symptoms of porphyria depend on which of your genes is abnormal.

Porphyrias are life-long diseases with symptoms that come and go. Some forms of the disease cause more symptoms than others. Proper treatment and avoidance of triggers can help reduce the time between attacks.

Patient of Porphyrias live depending on the severity the disease, treatments given and treatments accepted and various other factors. Your doctor will be the best judge to tell on this. Please consult him-  (+ info)

what are some statistics on porphyria?

Examples are

2 to 3

Any type of porphyria is fine just state the type and the stats

thank you

  (+ info)

What is Porphyria? If you have it, what is it like?

I'm doing an essay on this. I know that it occurs as a result of abnormally metabolized hemoglobin, but could you give me a summary of the symptoms (I know there are a lot).

How does having porphyria effect someone's lifestyle/life?

How was it discovered and what are some ways of curing it?

Is it easily curable?

Do you know someone who has porphyria? If so, is there anything different about them? (emotionally)
Also, what are the different types of porphyria? I saw that people use abbreviations when stating the type they have. What do they mean?

How do people treat you? I understand that people with porphyria look different, but I wouldn't treat them like they were aliens or something. How would you treat them, because I read that they were often treated badly=(

Porphyria is not actually an “IT” it is a “THEM”! Porphyria is a term that refers to a group of disorders—the porphyrias—that affect the nervous system or skin, or both. Each type of porphyria is due to the deficiency of one of the enzymes needed to make a substance in the body called heme. Enzymes are proteins that help chemical reactions happen in the body. Making heme involves a series of eight different enzymes, each acting in turn. Heme is a red pigment composed of iron linked to a chemical called protoporphyrin. Heme has important functions in the body. The largest amounts of heme are in the blood and bone marrow in the form of haemoglobin within red blood cells. Haemoglobin gives blood its red colour and carries oxygen from the lungs to all parts of the body. In the liver, heme is a component of proteins that have many functions, including breaking down hormones, drugs, and other chemicals and generating high-energy compounds that keep liver cells alive and functioning normally. The body makes heme mainly in the bone marrow and the liver. The process of making heme is called the heme biosynthetic pathway. Each step of the process is controlled by one of eight enzymes. If any one of the enzymes is deficient, the process is disrupted. As a result, porphyrin or its precursors—chemicals formed at earlier steps of the process—may build up in body tissues and cause illness.


It is extremely important to obtain an accurate diagnosis before trying to find a cure. Many diseases and conditions share common symptoms.

The information provided here should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions.

I add a link with details of this subject


Hope this helps
Matador 89  (+ info)

I have accute intermittent porphyria and constant stomach pain...what can i take to relieve it?

no doctor seems to be able to help me

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Can anyone get me a shape or image of the protein affected by porphyria?

Porphyria describes a number of biochemical abnormalities that affect the synthesis of heme -- the ring responsible for carrying oxygen in the hemoglobin molecules in red blood cells. Heme is not a protein at all, in fact. See the link below for information about it:  (+ info)

Can people with porphyria give blood?

I don't know if I'm eligible to donate.

The answer is, it depends. lol! Sounds like a lame answer, but it is actually a correct one!
Some people with certain types of porphyria have blood drawn for theraputic reasons. Honestly, since we do not have acccess to your medical chart and have no idea about your overall health, you really should be asking your managing physcian about this.
Wish I could be of more help, but really, this one is an "ask your doctor" kind of question! Hope you can, blood is always needed!  (+ info)

What is Porphyria-in a simple definition?

All the websites are so confusing-i'm doing a project and i don't understand.

It's a group of total body illnesses that result from the accumulation in the blood of toxic chemicals which are mistakenly produced due to errors in the body's metabolism of hemoglobin, the iron-containing, oxygen-carrying red pigment in our blood.
They're quite rare, can be quite nasty.  (+ info)

what is the cure for accute intermitent porphyria?

is there any medicine that will relieve the symptoms of AIP

  (+ info)

what is the solutions for porphyria illness?

the solutions and the ways that ill go and make ill good and no ill

Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other. 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.

The clinical manifestations of the different types of porphyria are not the same. Forms of treatment also depend on the type of porphyria. Therefore, it is difficult to make general statements that apply to all these disorders.

The symptoms arise mostly from effects on the nervous system or the skin. Effects on the nervous system occur in the acute porphyrias. Proper diagnosis is often delayed because the symptoms are nonspecific. Skin manifestations can include burning, blistering, and scarring of sun-exposed areas.

The terms "porphyrin" and "porphyria" are derived from the Greek word "porphyrus" meaning purple. Urine from some porphyria patients may be reddish in color due to the presence of excess porphyrins and related substances in the urine, and the urine may darken after exposure to light.

This site includes much more information about porphyria. To continue reading a general overview of the disease, see the site below, and google "porphyria treatment"  (+ info)

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)

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