This page is dedicated to my collection of Frogs and a disease that I have - Hereditary Coproporphyria. Porphyria is a Metabolic Disorder. Little is known by medical professionals about this rare disease. Porphyrias are inherited or aquired diseases that result form an abnormal metabolism of heme biosynthesis pathway. More poetically, as described by the Nobel prize winner Hans Fischer, porphyrins are the substances that make blood red and grass green. Porphyria is not a single disease but is a group of at least eight disorders that differ considerably from each other. The types are ALAD-Deficiency Porphyria or ADP, Acute Intermittent Porphyria or AIP, Congenital Erthropietic Porphyria or CEP, Porphyria Cutanea Tarda or PCT, Hepatoerythropoietic Porphyria or HEP, Hereditary Coproporphyria or HCP, Variegate Porphyria or VP, Erythropoietic Protoporphyria or EEP . Porphyria in itself is not a lifethreatening disease. Certain symptoms during an “acute attack” if not treated properly and quickly can be. Treatment varies dependant on the type of porphyria. AIP and HCP have very similar and distinct symptoms. They range from nausea and vomitting to constipation, to extreme abdominal pain, perphrial neuropathy . Symptoms can also mimic manic depression, and is sometimes diagnosed as such. People who suffer from Porphyria are often labeled as “drug seekers”. Nothing could be further from the truth. Many factors can bring on an acute attack. Certain drugs, environmental factors, certain chemicals and smells, and stress. This can be and often is a debilitating disease. Many people go through life with Porphyria and never know they have it, unless an attack is triggered. Even then a diagnosis is fleeting. One of the most prevelent symptoms is “purple “ urine. Urine colors can range form tea colored to orange. But please be aware if you are taking certain drugs or vitamins they can cause urine discoloration. You will find several links to web sites regarding Porphyra on this page. If you have been diagnosed I highly recommending checking them out. As this is a rare disease and very little is known about treatment procedures, you need to become your own advocate, obtain as much information as you can. Print out the list of safe and unsafe drugs and carefully scrutinize any prescription your doctor may write for you. There is an online support group for Porphyria patients and/or their families. I have found much comfort and love from the members, I’m sure you will too. Thank you for visiting my site and check back from time to time as I will be updating and adding new information.

You are visitor number: Thanks, for stopping in.

My Links

This Haven Web Ring site is owned by Pat Hadwin. Want to join the The Haven Web Ring?
[Skip Prev] [Prev] [Next] [Skip Next] [Random] [Next 5] [List Sites]