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Doctor insights on: Which Vaccines Are Safe With Porphyria

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What cause a porphyria attack?

What cause a porphyria attack?

Porphyria results…: From lack of an enzyme in the path for making heme, the oxygen-carrying part of blood. There are many triggers for attacks:alcohol; smoking; drugs (barbiturates, sulfa antibiotics) phenytoin; progesterone; sun exposure; increased iron intake; chronic viral illness (hcv, hiv); stress (illness, emotional/ psycho-logical, physical); dieting/fasting. http://www.porphyriafoundation.com/ for more info. ...Read more

Dr. Aletha Tippett
91 doctors shared insights

Porphyria (Definition)

Metabolic disorders caused by abnormalities in the synthesis of heme, the portion of hemoglobin which carries the iron inside red blood cells. Symptoms can range from light sensitivity to liver failure to nerve damage to bouts of terrible pain.Special testing is required to ...Read more


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How is acute porphyria usually treated?

How is acute porphyria usually treated?

Supportive care: Glucose and hematin derivatives can be used to manage the acute attacks. The key to treatment is patient education -- it's a lifetime of learning to avoid the triggers and becoming more familiar with the illness than a physician specialist. ...Read more

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Please help! what is the disease porphyria?

Please help! what is the disease porphyria?

Porphyrias: Porphyria (poor-FEAR-e-uh) refers to a group of disorders that result from a buildup of natural chemicals that produce porphyrin in your body. Porphyrins are essential for the function of hemoglobin — a protein in your red blood cells that links to porphyrin, binds iron, and carries oxygen to your organs and tissue. High levels of porphyrins can cause significant problems. Porphyria mainly affects your nervous system, skin and other organs. The signs and symptoms of porphyria can vary, depending on the specific type and severity. Porphyria is usually inherited — one or both parents pass along an abnormal gene to their child. But in some types of porphyria, environmental factors may trigger the development of symptoms. ...Read more

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What is the definition or description of: porphyria?

What is the definition or description of: porphyria?

Porphyria: The porphyrias are metabolic disorders caused by abnormalities in the synthesis of heme, the portion of hemoglobin which carries the iron inside red blood cells. The manifestations of porphyria vary considerably depending on the mutation involved, ranging from light sensitivity to liver failure to nerve damage to bouts of terrible pain. Special testing is required to make an accurate diagnosis. ...Read more

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What is a workup for porphyria? I highly suspect I suffer from it.

What is a workup for porphyria? I highly suspect I suffer from it.

Fairly rare disorder: Would start with a 24 hr urine collection for porphyrins, and if convincingly positive could do additional studies. However, low level elevations may be seen associated with dietary intake. A hematologist could aid in your assessment. ...Read more

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How are the porphyrias inherited?  can my children inherit porphyria from me?

How are the porphyrias inherited?  can my children inherit porphyria from me?

It is possible: It is autosomal dominant. In addition there are 200 different mutations. The porphobilinogen deaminase gene is responsible - not providing enough to breakdown heme. 1-5 cases per 100, 000 people in the USA. ...Read more

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Is porphyria research being conducted?  how can I volunteer to participate in research? 

Porphyria research: Information about ongoing research can be found at the american porphyria foundation website. Www. Porphyriafoundation.Com. ...Read more

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Porphyria cutanea tarda symptoms?

Porphyria cutanea tarda symptoms?

Skin changes: A physician familiar with pct can make the call just on physical exam. The labs are confirmatory. A check for iron overload and hepatitis c are wise, but you'll manage the illness by becoming educated and doing a few simple things. Best wishes. ...Read more

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What are the risks of acute porphyria?

What are the risks of acute porphyria?

Very serious: The pain is often agonizing, the mental confusion can land the person in the mental hospital permanently, the hyponatremia can be dangerous, and even the constipation sufficient to wreck the quality of life. Management of the illness is successful only if the patient can become educated and proactive in their own care. ...Read more

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Hows porphyria cutanea tarda diagnosed?

Hows porphyria cutanea tarda diagnosed?

See below: The preferred screening test for pct is a measurement of porphyrins in plasma. This can differentiate pct from variegate porphyria. The patterns of porphyrins in urine (predominately uroporphyrin and 7-carboxylate porphyrin) and feces (predominately isocoproporphyrin) help to confirm the diagnosis. The presence of an inherited deficiency of urod can be demonstrated by measuring the enzyme in rbcs. ...Read more

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What is the scientific term for porphyria?

What is the scientific term for porphyria?

Porphyria: There are nine subtypes, each different, due to deficiency of a particular enzyme. ...Read more

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How to prevent attacks of acute porphyria?

How to prevent attacks of acute porphyria?

Become pro-active: One of my study cases with the medical students involves an unfortunate woman whose illness was missed and was given Phenobarbital for her "nerves", with lethal results. Learn what medications and stressors to avoid. Stay fit. Good hydration and perhaps a sugary drink may help if you can sense an attack coming up; your physician will know whether to offer hematin. Best wishes. ...Read more

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What is this rare disease called porphyria?

What is this rare disease called porphyria?

Porphyria: From adam: "porphyrias are a group of rare disorders passed down through families, in which an important part of hemoglobin, called heme, is not made properly. Heme is also found in myoglobin, a protein found in certain muscles... Patients with porphyria have a deficiency of certain enzymes needed for this process. Porphyrias involve 3 major symptoms: abdominal pain, rashes, and neurologic symptom. ...Read more

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Is it possible for you to die from porphyria cutanea tarda?

Is it possible for you to die from porphyria cutanea tarda?

No, but...: There is often underlying hemochromatosis, alcohol abuse or hepatitis c and these are often deadly if missed. Depending on the gene that gave you the pct, you may have none of these above. It won't kill you, but it can mutilate your skin. Get with someone good at managing this illness. ...Read more

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Can an abnormal liver test result be a sign of porphyria?

Can an abnormal liver test result be a sign of porphyria?

More common causes: Porphyria can cause abnormal liver tests, but there are far more common causes of liver abnormality, e.g., alcohol. See this site for more info. http://www.ncbi.nlm.nih.gov/pubmedhealth/pmh0002188/. ...Read more

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Are there any good treatments for acute intermittent porphyria?

Are there any good treatments for acute intermittent porphyria?

Avoid triggers: Glucose and hematin work so-so for the acute attacks; the key to managing this treacherous illness (after making the diagnosis) is to learn what triggers the attacks and to avoid it. Sometime as simple as an old-fashioned barbiturate "to relax" can be deadly. Truly undestand the process and life can be enjoyed fully. ...Read more

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What is “latent” porphyria?  if my doctor told me that I have “latent” porphyria, does this mean that I will never have any symptoms?

What is “latent” porphyria?  if my doctor told me that I have “latent” porphyria, does this mean that I will never have any symptoms?

Porphyria: It depends on what type of porphyria we're talking about. Some porphyrias can be dangerous, and some can be hereditary so you need to be more specific about what type you're worried about so that you can get appropriate advice from your physician. Lots of information can be found on the website for the american porphyria foundation at www.Porphyriafoundation.Com. ...Read more

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My doctor diagnosed me with porphyria but the porphyria expert said I did not have it.  why would this happen and should I be retested?

My doctor diagnosed me with porphyria but the porphyria expert said I did not have it.  why would this happen and should I be retested?

Porphyria: Testing for porphyria can be very tricky. General medicine doctors can sometimes have difficulty interpreting the test results correctly. If a porphyria expert says you don't have it, that's most likely true. Another option would be to see a different porphyria expert. ...Read more

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