Porphyria..... What is that? This is the question I asked when told I have Hereditary Coproporphyria. My doctors response was basically.."It's a hereditary disease and there is no cure. I have to refer you to someone else." Ok, so the someone else knew only little more than he. I began my own search for answers. That is why I have this web page, to provide some basic information to all who may be interested in learning. Please understand I am NOT a medical professional, the information here is just that, information. If you have been diagnosed, please seek medical help. I do not claim to be an expert and can only speak from my own personal experiences.

And oh yes, I love Frogs, I know a silly thing to collect but everyone has their own vices. My current collection is in excess of 300, in varying sizes, shapes and descriptions.

Porphyria is a Metabolic Disorder. Little is known by medical professionals about this rare disease. Porphyria is either an inherited or an aquired disease that results from 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 life-threatening 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, extreme abdominal pain, and perphrial neuropathy. A high carbohydrate diet can be most helpful in keeping attacks at bay. Symptoms can also mimic manic depression, and is sometimes diagnosed as such. Depression is apparently very normal with this disease. I went through a very rough time with it and still fight it almost daily. But I have accepted the fact that I have porphyria and will live with it for the rest of my life. I just hope that I can, by having this web page give someone a little comfort in knowing they are not alone.

People who suffer from Porphyria are often labeled as "drug seekers". Nothing could be further from the truth. If you have porphyria you understand this statement. The abdominal pain is so severe at times that narcotic analgesics are required to control it. I unfortunately was not diagnosed for many years and now have daily chronic pain.

Many factors can bring on an acute attack. Certain drugs, environmental factors, certain chemicals and smells, and stress. Stress definately exasperates this illness. 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. Triggers are different for everyone. I still have no idea what triggered mine. A diagnosis is fleeting. One of the most prevelent symptoms is "purple " urine. Urine colors can range from tea colored to orange, even pink The feces can also be "off" colored. But please be aware if you are taking certain drugs or vitamins they can cause urine discoloration.

I am a proud member of The Haven Web Ring. If you have been diagnosed I highly recommending clicking on the links. 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 from http://www.uq.edu.au/porphyria/ 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 knowledge, comfort and support from the members, As with other chronic illnesses emotional support is extremely important.At the present time new members to the list are accepted by referral only. E-mail me for more information.

Thank you for visiting my site and check back from time to time as I will be updating and adding new information.

This is a "neonized" version of the tag on my car

ICQ # 17397242

This Haven Web Ring site is owned by Pat Hadwin. Want to join the The Haven Web Ring?
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