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Porphyria is a disorder in which the body produces too much of the
chemical porphyrin. Porphyrin is used to make heme, the part of blood that
carries oxygen. Heme also gives blood its color. Any circulating porphyrin
the body doesn't use is excreted in urine and stool. When the body
produces and excretes too much porphyrin, as happens with porphyria, not
enough heme remains to keep a person healthy.
Porphyria affects either the nervous system or the skin. When porphyria
affects the nervous system, it can cause chest pain, abdominal pain,
muscle cramps, weakness, hallucinations, seizures, purple-red-colored
urine, or mental disorders like depression, anxiety, and paranoia. When
porphyria affects the skin, blisters, itching, swelling, and sensitivity
to the sun can result.
Porphyria is an inherited condition. Attacks of the disease can be
triggered by drugs (barbiturates, tranquilizers, birth control pills,
sedatives), chemicals, certain foods, and exposure to the sun.
Porphyria is diagnosed through tests on blood, urine, and stool. It can
be treated with medicines to relieve symptoms, a drug called hemin (which
is like heme), or a high-carbohydrate diet.
More information is available from
American Porphyria Foundation
P.O. Box 22712
Houston, TX
77227
Phone: (713) 266-9617
Email: porphyrus@aol.com
Internet: http://www.porphyriafoundation.com/
National Organization for Rare Disorders Inc. (NORD)
55
Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
Phone:
1-800-999-6673 or (203) 744-0100
Fax: (203) 798-2291
Email: orphan@rarediseases.org
Internet:
http://www.rarediseases.org/
American Liver Foundation
75 Maiden Lane, Suite 603
New
York, NY 10038
Phone: 1-800-GO-LIVER (465-4837)
Email: info@liverfoundation.org
Internet:
http://www.liverfoundation.org/
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