Question 1

what's  porphyria?

Accepted Answer

Disease family: Maybe 1 person in 1000 is born with a strong tendency to porphyria cutanea tarda and some forms of hepatitis can bring it out even in a normal person; it blisters and scars sun-exposed skin. Other porphyrias masquerade as abdominal pain, mental illness, constipation, low sodium, and chronic nerve pain -- and screening tests are often done wrong. Good luck.

Question 2

how does one get porphyria?

Accepted Answer

Inherited: Typically inherited problem in the breakdown of red blood cells, in particular heme. The abdominal pain and crises can be set off by medications, alcohol, or low calorie diets. Medications that cause include but are not limited to barbiturates, anticonvulsants, estrogens, oral contraceptives, or even supplements (chromium for example).

Question 3

can men have acute porphyria?

Accepted Answer

Yes: Both men and women can have acute porphyria.  However, attacks are more common in women because of hormonal changes that occur during the menstrual cycle.

Question 4

can porphyria improvewith age?

Accepted Answer

With treatment: Since most forms of porphyria are inherited there is not a cure for them. Depending on the type, treatment can relieve symptoms and improve quality of life. Acquired porphyria can improve with removal of the triggering causes.

Question 5

how are the porphyrias classified?

Accepted Answer

Depends: There  are  7 major  metabolic disorders caused by  an altered enzyme in the heme pathway.  The  3 most common are porphyria cutanea tarda (pct), acute intermittent porphyria (aip), and erythropoietic protoporphyria (epp).

Question 6

what is the prognosis of porphyria?

Accepted Answer

Very challenging: 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 prolong the time between attacks. But attacks are quite painful and can be fatal. Life is a real struggle for someone with porphyria but it is possible to even do great things - some historical figures have suffered it.

Question 7

what are the symptoms of porphyria?

Accepted Answer

See below: Porphyrias involve three major symptoms:
•abdominal pain or cramping (only in some forms of the disease)

•light sensitivity causing rashes, blistering, and scarring of the skin (photodermatitis)

•problems with the nervous system and muscles (seizures, mental disturbances, nerve damage).

Question 8

whatprecipitates a porphyria attack?

Accepted Answer

Depends on the type: There are 8 different kinds of porphyria. Depending on the type of porphyria, an attack can be precipitated by sunlight exposure, alcohol, inadequate diet, carbohydrate restriction, certain drugs or chemicals, hormonal changes & stress. Often a combination of triggers can precipate an attack.  For more info, see the porphyria foundation's website: http://www.Porphyriafoundation.Com/about-porphyria.

Question 9

how is acute porphyria usually treated?

Accepted Answer

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.

Question 10

do i need a special diet with porphyria?

Accepted Answer

Probably not: There are different types of porphyrias and most of them are not affected by dietary manipulation.  There is some evidence that a high carbohydrate diet will alleviate some of the acute attacks.  All this should be coordinated through a physician who deals with this type of metabolic problem.

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What's porphyria?

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How is acute porphyria usually treated?

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Do i need a special diet with porphyria?

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