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| | Porphyria - Wikipedia, the free encyclopedia |
 | | The erythropoietic porphyrias primarily affect the skin, causing photosensitivity (photodermatitis), blisters, necrosis of the skin and gums, itching, and swelling, and increased hair growth on areas such as the forehead. | | | Porphyria has been suggested as an explanation for the origin of vampire and werewolf legends, based upon a number of similarities between the condition and the folklore. | | | Patients who experience frequent attacks can develop chronic neuropathic pain in extremities as well as chronic pain in the gut.This is thought to be due to axonal nerve deterioration in affected areas of the nervous system. |
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http://en.wikipedia.org/wiki/Porphyria
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| | FEEDBACK |
| | Those in the 'unsafe group' which have been reported by two or less workers in the field to be associated with clinical exacerbations of porphyria or, in the 'safe group', those considered by two or fewer authorities to be harmless to porphyric patients on the basis of their clinical experience. | | | Those in the 'unsafe group' which have been reported by three or more workers in the field to be associated with clinical exacerbations of porphyria or, in the 'safe group', those considered by three or more authorities to be harmless to porphyric patients on the basis of their clinical experience. | | | The ultimate aim of investigative programs in the porphyria is to identify as many as possible of the cases latent for these diseases, using sensitive enzyme-screening tests, and by a program of education, especially on drug usage, transform these potentially fatal conditions to mere genetic curiosities. |
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http://www.uq.edu.au/porphyria/PORGUIDE3.htm
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| | the p o r p h y r i a blog |
| | Porphyria cutanea tarda (PCT), the commonest of all porphyrias, is usually characterized by blisters and fragility of skin in light-exposed areas. | | | We conclude that charcoal therapy in porphyria may not be without risk, and should be used with caution. | | | A genetic counselor can review your family history and risks for this disorder in you and your offspring and discuss appropriate testing that is available for you. |
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http://porphyria.blogspot.com
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| | Porphyria Pediatric Oncall |
| | A: Acute porphyrias vary in their clinical presentation. | | | A: Skin problems in porphyria are usually acquired conditions. | | | Q: What is the skin problem in porphyria? |
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http://www.pediatriconcall.com/fordoctor/diseasesandcondition/porphyrias.asp
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| | MedlinePlus Medical Encyclopedia: Porphyria |
| | Personality changes may develop during an acute attack, in addition to peripheral paresthesia (numbness and tingling), weakness, paralysis, sensory changes, and muscle pain. | | | Genetic counseling may be of benefit to prospective parents with a family history of any type of porphyria. | | | Calling your health care provider Return to top |
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http://www.nlm.nih.gov/medlineplus/ency/article/001208.htm
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| | Porphyria |
| | In conclusion, caterpillar bodies appear to represent a specific feature of porphyria cutanea tarda (specificity, 98%) but were present in less than half of those cases in this study (sensitivity, 43%). | | | There was more than a ninefold difference between the highest level in any control subject and the lowest level in any patient with variegate porphyria. | | | The recoveries of porphyrins added to plasma were 71-114% except for protoporphyrin, which could not be reliably measured with this technique. |
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http://www.thedoctorsdoctor.com/diseases/porphyria.htm
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| | Porphyria Index |
| | Thus individuals with porphyria may be seriously harmed by doctors without specific training and information related to porphyria. | | | Cytochrome P-450 heme synthesis and detoxification pathways show up as porphyria type problems. | | | One fifth of all pharmaceuticals are detoxified by the cytochromes, and will thus place additional burdens upon the porphyrin related pathways. |
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http://www.mall-net.com/mcs/porphyria.html
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| | eMedicine - Porphyria, Acute Intermittent : Article by Thomas G DeLoughery, MD |
| | Medicine is a constantly changing science and not all therapies are clearly established. | | | Skin examination: Unlike many other porphyrias, AIP is not associated with a skin rash. | | | The goals of pharmacotherapy are to reduce morbidity and to prevent complications. |
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http://www.emedicine.com/MED/topic1880.htm
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| | About Porphyria: Acute Intermittent Porphyria (AIP) |
| | Given these considerations, most patients or individuals with "latent" porphyria elect to have children for the same reasons as anyone else. | | | Join the APF—Your donations help support patient and physician education as well as porphyria research. | | | How heme therapy should be used to prevent attacks is not well established. |
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http://www.porphyriafoundation.com/about_por/types/types01.html
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| | Porphyria |
| | This drug list is very helpful in that it is catagorized by type of medicine. | | | For giving out as resources for people wanting to learn more about Porphyria. | | | A wealth of information about Porphyria and links |
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http://www.geocities.com/Heartland/Valley/7299/Porphyria.html
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| | Guide to Porphyria - Canadian Porphyria Foundation |
| | The Canadian Porphyria Foundation disclaims for itself and for the author of this guide, all responsibility for any mis-statements or for consequences of actions taken by any person while acting on information contained herein. | | | This guide is designed to serve as an introduction to the clinical condition called porphyria. | | | Physicians and patients must make their own decisions about therapy according to the individual circumstances of each case. |
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http://www.cpf-inc.ca/guide.htm
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| | [No title] |
| | Glucose is given by vein because the stomach and intestine usually do not function properly during an attack, and material taken by mouth is not properly propelled through these organs. | | | List all your daily activities (difficulties doing them), medications taken, what were your limitations, what was your pain scale (and what hurt), were you hampered from doing chores, miss work/school/church, etc... | | | offers an email support and education group dedicated to helping you fine tune your Porphyria research. |
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http://members.tripod.com/~theaipforum
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| | THE PORPHYRIAS |
| | The porphyrias are among the most-hated diseases in medicine. | | | The most important "acquired porphyria" is lead poisoning, which simulates acute intermittent porphyria (abdominal pain, insanity, etc). | | | *You will learn how to treat acute intermittent porphyria on rotations. |
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http://www.pathguy.com/lectures/porphyri.htm
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| | British Porphyria Association |
| | Distribution of articles on all types of porphyria for use by those with the condition. | | | To maintain contact with other Porphyria support groups in other countries to share information and recent developments in research and treatments. | | | Provision of support through: 1) meetings, 2) Counseling, 3) Dissemination of advice and information |
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http://www.porphyria.org.uk
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| | Porphyria Cutanea Tarda: Porphyrias: Merck Manual Home Edition |
| | People with porphyria cutanea tarda experience chronic, recurring blisters of various sizes on sun-exposed areas such as the arms, face, and especially the backs of the hands. | | | are also effective in treating porphyria cutanea tarda. | | | Introduction· Acute Intermittent Porphyria· Erythropoietic Protoporphyria·Porphyria Cutanea Tarda |
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http://www.merck.com/mmhe/sec12/ch160/ch160b.html
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| | European Porphyria Initiative |
| | The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria, focusing in particular on the prevention and treatment of acute attacks, to provide information and support to families affected by porphyria, and to support and encourage medical research. | | | EPI was formed in order to compare experience between countries, attempt to develop a common approach to the management of these diseases and to facilitate international collaborative clinical research and development. | | | Porphyrias are uncommon diseases for which diagnosis and treatment varies in individual countries. |
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http://www.porphyria-europe.com
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| | MedlinePlus: Porphyria |
| | Genetics Home Reference: Acute intermittent porphyria (National Library of Medicine) | | | Genetics Home Reference: ALAD deficiency porphyria (National Library of Medicine) | | | Genetics Home Reference: Congenital erythropoietic porphyria (National Library of Medicine) |
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http://www.nlm.nih.gov/medlineplus/porphyria.html
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| | Porphyria - Genetics Home Reference |
| | The prevalence of this condition is unknown, but probably ranges from 1 in 500 to 50,000 worldwide. | | | Genetic changes are related to the following types of porphyria. | | | Some porphyrias have a combination of acute symptoms and symptoms that affect the skin. |
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http://ghr.nlm.nih.gov/condition=porphyria
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| | Chemical Injury and Disorders of Porphyrin Metabolism |
| | People with porphyria are likely to react badly to some medications, have chemical injury in other body organ systems and beware could react to medications that are not believed to aggravate porphyria. | | | Except for Porphyria Cutanea Tarda, however, they offer no information on chemically-acquired disorders of porphyrin metabolism or "porphyrinuria." | | | Patients with PCT and the other non-acute porphyrias have a variety of skin symptoms as a result of often severe "photosensitivity" to sunlight. |
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http://www.mcsrr.org/resources/articles/S5.html
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| | Welcome to the American Porphyria Foundation |
| | The APF is dedicated to improving the health and well-being of individuals and families affected by porphyria. | | | Join the APF—Your donations help support patient and physician education as well as porphyria research. | | | This document includes essential information about porphyria, types, testing, and treatment with Panhematin. |
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http://www.porphyriafoundation.com
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| | Home - Canadian Porphyria Foundation |
| | The mission of the Canadian Porphyria Foundation is to improve the quality of life for people affected by porphyria. | | | If you are interested in safe and unsafe medications for porphyria, we are using the Swedish Drug List with their approval. | | | You can also refer to Dr. Tobe's Guide to Porphyria. |
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http://www.cpf-inc.ca
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| | Porphyria - MayoClinic.com |
| | People with cutaneous porphyria develop blisters, itching, and swelling of their skin when it is exposed to sunlight. | | | Treatment depends on the type of porphyria and may include heme therapy and medications to manage signs and symptoms. | | | Signs and symptoms appear intermittently and may include pain in the chest, abdomen, arms, legs or back; muscle numbness, tingling, paralysis or cramping; vomiting; constipation; and personality changes or mental disorders. |
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http://www.mayoclinic.com/health/porphyria/AN00850
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| | Porphyria |
| | People with cutaneous porphyria develop blisters, itching, and swelling of their skin when it is exposed to sunlight. | | | The porphyria disorders can be grouped by symptoms—whether they affect the skin or the nervous system. | | | Symptoms of acute porphyria include pain in the chest, abdomen, limbs, or back; muscle numbness, tingling, paralysis, or cramping; vomiting; constipation; and personality changes or mental disorders. |
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http://digestive.niddk.nih.gov/ddiseases/pubs/porphyria
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| | Porphyria - The Unknown Disease |
| | Porphyria Educational Services in no way shall be held responsible in part or whole for any injury, misinformation, neglience, or loss incurred by you. | | | The diagnosis and treatment of the porphyrias are based upon the entire encounter between a physician and the individual patient. | | | The information found on the Porphyria Educational Services Web Site is just information on the disease porphyria and it's associated symptoms, and treatment. |
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http://members.tripod.com/~PorphBook
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| | Porphyria |
| | Because the symptoms of the various porphyrias may resemble symptoms of other disorders, diagnosis may be difficult. | | | There are two general categories of porphyrias, those that affect the skin and those that affect the nervous system. | | | Porphyria is a group of at least eight metabolic disorders that arise as a result of a malfunction in one of the eight steps in the body’s synthesis of a complex molecule called heme. |
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http://www.peacehealth.org/kbase/nord/nord675.htm
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| | Porphyria |
| | ALAD-Deficiency Porphyria (ADP), Acute Intermittent Porphyria (AIP), Congenital Erythropoietic Porphyria (CEP), Porphyria Cutanea Tarda (PCT), Hepatoerythropoietic Porphyria (HEP), Hereditary Coproporphyria (HCP), Variegate Porphyria (VP), Erythropoietic Protoporphyria (EPP) or Protoporphyria | | | , MR Moore, Porphyria Research Unit, University of Queensland, NRCET, Australia, acute porphyria, drug lists, diagnosis, management, therapy, other |
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http://www.kumc.edu/gec/support/porphyri.html
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| | Porphyria |
| | Diagnosis of acute attacks is established by measuring urinary ALA and PBG, and treated with heme arginate. | | | Inherited porphyrias are a group of monogenic, mostly autosomal dominant disorders characterized by the markedly increased formation and excretion of porphyrins and their precursors (delta aminolevulinic acid or ALA, and porphobilinogen or PBG). | | | Each type of porphyria is the result of a dysfunctioning enzyme involved in the biosynthesis of heme. |
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http://www.orpha.net/static/GB/porphyria.html
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| | King George's Illness |
| | Symptoms of the disease can include (but are not limited to) photosensitivity, strong abdominal pain, port wine-colored urine, muscle weakness or paralysis in the arms and legs, and behavioral changes including anxiety, irritability, and confusion. | | | The interruption of nerve impulses to the brain can cause the development of psychiatric symptoms such as depression or delirium. | | | A common feature of all porphyrias is the accumulation in the body of "porphyrins" or "porphyrin precursors." These are normal body chemicals, but they do not normally accumulate. |
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http://www.people.virginia.edu/~jlc5f/charlotte/porphyria.html
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| | Cheryl Ann's Porphyria Page |
| | Mara's Porphyria Journey is her personal porphyria story. | | | I was diagnosed with Variegate Porphyria in May 1997. | | | Information about porphyria and places to meet others with porphyria can be found at my |
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http://www.geocities.com/porphyria2000
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| | Amazon.com: Porphyria: The Woman Who Has "the Vampire Disease": Books: Tammy Evans |
| | Porphyria is the astonishing story of a young woman who must endure the days her complexion turns eerily waxy and the suffering caused by visual distortions, abrupt changes of personality, and an inability to tolerate sunlight. | | | As a porphyria patient, I was eager to read this book. | | | There have also been more aggressive treatment options and banned drug lists since the 1970's. |
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http://www.amazon.com/exec/obidos/tg/detail/-/0882821563?v=glance
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| | november 14 press release re. porphyria |
| | 3) Intoxication Porphyria may not be the only acquired (non-inherited) form of the disease. | | | While there is no cure for porphyria, those with the disease--like others with multiple chemical sensitivity--should be counseled to avoid aggravating exposures to sunlight, heavy metals, and chemicals (especially unnecessary medications). | | | The porphyrias are a group of mostly inherited and incurable enzyme deficiency disorders which are aggravated by exposure to chemicals and other environmental and physiological stressors. |
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http://www.mcsrr.org/pressreleases/prgws94a.html
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| | The Straight Dope: Did vampires suffer from the disease porphyria or not? |
| | (5) No one has proved that garlic worsens porphyria. | | | Skin problems are a fairly common symptom, but only the rarest form--congenital erythropoietic porphyria--causes severe disfigurement. | | | Drinking blood will not alleviate their symptoms, nor has there ever been a general belief that it would. |
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http://www.straightdope.com/classics/a990507.html
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| | SparkNotes: Robert Browning's Poetry: "Porphyria's Lover" |
| | This is not to say that Browning is trying to shock us into condemning either Porphyria or the speaker for their sexuality; rather, he seeks to remind us of the disturbed condition of the modern psyche. | | | This is the principle Browning adheres to in "Porphyria's Lover." In light of contemporary scandals, the sexual transgression might seem insignificant; so Browning breaks through his reader's probable complacency by having Porphyria's lover murder her; and thus he provokes some moral or emotional reaction in his presumably numb audience. | | | She bares her shoulder to her lover and begins to caress him; this is a level of overt sexuality that has not been seen in poetry since the Renaissance. |
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http://www.sparknotes.com/poetry/browning/section1.html
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| | Porphyria |
| | The pathogenesis of any inherited porphyria has now been defined at the molecular level. | | | Congenital erythropoietic porphyria (CEP) - Günther's disease; severe dermatologic | | | It is clear there is a great deal of genetic heterogeneity in each porphyria. |
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http://www.5mcc.com/Assets/SUMMARY/TP0724.html
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| | Porphyria |
| | Porphyrias can be divided into 2 subgroups: Hepatic and Erythropoietic | | | Hematin: Suppresses symptoms of acute attack by 3 or 4 days | | | All porphyrias produce elevated urine δ-amino-levulinic acid during attacks: External link |
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http://www.neuro.wustl.edu/neuromuscular/nother/porph.htm
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