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Doctor insights on: Sunlight Hurts When It Hits My Skin Have You Heard Of Porphyria

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Sunlight hurts when it hits my skin. Have you heard of porphyria?

Sunlight hurts when it hits my skin. Have you heard of porphyria?

Sun sensitivity: Porphyria is a disease of hemoglobin metabolism where abnormal chemicals are produced in the body that are sensitive to ultraviolet light. In severe forms of porphyria, people get red teeth and lips, and it is believed that count dracula had porphyria, and could only go outdoors at night. It is likely that you have another form of sun sensitivity, so use a sunscreen, and use long sleeve shirts. ...Read more

Dr. Aletha Tippett
93 Doctors shared insights

Porphyria (Definition)

Metabolic disorders caused by abnormalities in the synthesis of heme, the portion of hemoglobin which carries the iron inside red blood cells. Symptoms can range from light sensitivity to liver failure to nerve damage to bouts of terrible pain. Special testing is required to ...Read more


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I have Porphyria cutanea tarda. How can you remove milia that grows under my skin (hands). I assume it's milia 'cos they're tiny white cyst like bumps?

I have Porphyria cutanea tarda. How can you remove milia that grows under my skin (hands). I assume it's milia 'cos they're tiny white cyst like bumps?

There are kits: Some brave folks use equipment to remove them in their own, or any dermatologists can do this easily. Since there is often vessel compromise in PCT, ask for a physician's guidance Before you start with your own needle and curette. ...Read more

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Does porgyria suffers from rarest skin disease?

Does porgyria suffers from rarest skin disease?

Progeria: There are a variety of diseases, all genetic and uncommon, in which the person's skin has some features of an older person's from the time of birth. None is true mimic of fast aging. No one knows what the rarest skin disease is, because we discover new ones monthly and the rarest is surely undiscovered. But if you have progeria, it's a challenge and you have my sympathy. ...Read more

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Can porphyria improve with age?

Can porphyria improve with age?

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. ...Read more

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Do I need a special diet with porphyria?

Do I need a special diet with porphyria?

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. ...Read more

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Will porphyria affect my thinking and memory?  

Will porphyria affect my thinking and memory?  

Possibly: Porphyria symptoms can include depression, confusion, hallucinations & delusions. These symptoms are most likely to occur during an acute attack. Other symptoms that one may experience during an attack could also affect thinking & memory. For examply, nausea & pain may decrease one's ability to concentrate, thereby affecting memory & attention span. ...Read more

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How can I tell if I have a mild porphyria? Would it be hard to tell?

Not easy!: Porphyria is on of the most difficult diagnosis to make. The tests are quite specialized. Talk to an internist or endocrinologist who has experience with this diagnosis. ...Read more

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What is porphyria? What are the specific problems caused by porphyria?

What is porphyria? What are the specific problems caused by porphyria?

A rare disease: Porphyria is a very rare disease due to a problem is the production of porphoryin which become part of the hem molecule that eventually gets placedinto the hemoglobin to make red blood cells. The disease can cause skin problem abdominalmpain and other problems. ...Read more

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What's porphyria cutanea tarda?

What's porphyria cutanea tarda?

See below: Pct is one of the hepatic porphyrias. Large amounts of porphyrins build up in the liver when the disease is becoming active. The disease becomes active when acquired factors, such as iron, alcohol, hepatitis c virus (hcv), hiv, Estrogens (used, for example, in oral contraceptives and prostate cancer treatment) and possibly smoking, combine to cause a deficiency of urod in the liver. ...Read more

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What is porphyria cutanea tarda?

What is porphyria cutanea tarda?

Blistering disease: It is a disease that causes blistering seen more often in alcoholics because of enzyme defect causing increased porphyrins in blood. See dermatologist for full details and treatment. ...Read more

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Porphyria cutanea tarda symptoms?

Porphyria cutanea tarda symptoms?

Skin changes: A physician familiar with pct can make the call just on physical exam. The labs are confirmatory. A check for iron overload and hepatitis c are wise, but you'll manage the illness by becoming educated and doing a few simple things. Best wishes. ...Read more

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Can porphyria cause high bilirubin?

Can porphyria cause high bilirubin?

Might occur: Some variants of porphyria can affect the liver and cause abnormal liver testing. You can get answers by analyzing your urinary and serum porphyrin levels, and this could allow interventional approaches to bring under full control. ...Read more

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What are the risks of acute porphyria?

What are the risks of acute porphyria?

Very serious: The pain is often agonizing, the mental confusion can land the person in the mental hospital permanently, the hyponatremia can be dangerous, and even the constipation sufficient to wreck the quality of life. Management of the illness is successful only if the patient can become educated and proactive in their own care. ...Read more

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How's porphyria cutanea tarda diagnosed?

How's porphyria cutanea tarda diagnosed?

See below: The preferred screening test for pct is a measurement of porphyrins in plasma. This can differentiate pct from variegate porphyria. The patterns of porphyrins in urine (predominately uroporphyrin and 7-carboxylate porphyrin) and feces (predominately isocoproporphyrin) help to confirm the diagnosis. The presence of an inherited deficiency of urod can be demonstrated by measuring the enzyme in rbcs. ...Read more

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What is porphyria and what sets it off?

What is porphyria and what sets it off?

Porphyria: The porphyrias are hereditary conditions in which heme, the oxygen carrying molecule inside red cells, isn't made correctly. Several different enzyme mutations are responsible. A patient's symptoms depend on the enzyme affected. Some people are "set off" by exposure to light and others by certain diets or medications. You need to know the type of porphyria you have in order to know what to avoid. ...Read more

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How is porphyria cutanea tarda treated?

How is porphyria cutanea tarda treated?

See below: Pct is the most treatable of the porphyrias. Treatment seems to be equally effective in familial and non-familial pct. Factors that tend to activate the disease should be removed. The most widely recommended treatment is a schedule of repeated phlebotomies (removal of blood), with the aim of reducing iron in the liver. This actually reduces iron stores throughout the body. ...Read more

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What is the scientific term for porphyria?

What is the scientific term for porphyria?

Porphyria: There are nine subtypes, each different, due to deficiency of a particular enzyme. ...Read more

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How to prevent attacks of acute porphyria?

How to prevent attacks of acute porphyria?

Become pro-active: One of my study cases with the medical students involves an unfortunate woman whose illness was missed and was given Phenobarbital for her "nerves", with lethal results. Learn what medications and stressors to avoid. Stay fit. Good hydration and perhaps a sugary drink may help if you can sense an attack coming up; your physician will know whether to offer hematin. Best wishes. ...Read more

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What is this rare disease called porphyria?

What is this rare disease called porphyria?

Porphyria: From adam: "porphyrias are a group of rare disorders passed down through families, in which an important part of hemoglobin, called heme, is not made properly. Heme is also found in myoglobin, a protein found in certain muscles... Patients with porphyria have a deficiency of certain enzymes needed for this process. Porphyrias involve 3 major symptoms: abdominal pain, rashes, and neurologic symptom. ...Read more

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What can cause porphyria victims to crave blood?

What can cause porphyria victims to crave blood?

Old legend: There's an idea, probably ill-founded, that congenital erythropoietic porphyria, which produces hairiness, a mutilated face, red teeth, and pain on going into sunlight is the origin of vampire / werewolf tales. The tale that these people crave blood (this isn't a classic feature) may have been added as the story grew, though heme is one factor that suppresses some forms of the illness. ...Read more

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Do high level of porphyrins always mean you have porphyria?

Do high level of porphyrins always mean you have porphyria?

Not always: Increased protoporphyrin levels may be a sign of: anemia, chronic disease, infection, iron deficiency anemia and lead poisoning to name a few. ...Read more

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Is it possible for you to die from porphyria cutanea tarda?

Is it possible for you to die from porphyria cutanea tarda?

No, but...: There is often underlying hemochromatosis, alcohol abuse or hepatitis c and these are often deadly if missed. Depending on the gene that gave you the pct, you may have none of these above. It won't kill you, but it can mutilate your skin. Get with someone good at managing this illness. ...Read more

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What is the definition or description of: porphyria cutanea tarda?

What is the definition or description of: porphyria cutanea tarda?

Poor blood formation: Porphyria cutanea tarda (pct) describes a state where heme formation is poor. Common symptoms for a person exposed to sunlight are peeling fingernails and skin blisters. Exacerbating factors are iron, alcohol, and estrogen. Pct has a strong association with hepatitis c infection. ...Read more

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What kind of specialist diagnoses and treats different types of porphyria?

What kind of specialist diagnoses and treats different types of porphyria?

Porphyria: See a neurologist or a dermatologist at a university teaching hospital. ...Read more

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What are the differences between porphyria and aip (acute intermittent porphyria)?

Classification: Porphyria is a general term for a host of conditions, and acute intermittent porphyria is a variety of a more common variation in this disease category. ...Read more

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Can you tell me about the difference between porphyria and aip (acute intermittent porphyria)?

See below: Please consult this site for an explanation of this group of disorders.
http://www. Mayoclinic. Org/diseases-conditions/porphyria/basics/definition/con-20028849 ...Read more

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Can porphyria cause high urinary copper?

Can porphyria cause high urinary copper?

No, it does not: However, there are several copper metabolism issues that can occur, including Wilson's disease, and a serum ceruloplasmin level can objectify some of the concerns. ...Read more

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Can someone with porphyria cutanea tarda make babies?

Can someone with porphyria cutanea tarda make babies?

YES!: Although rare, pregnancies have been reported in women suffering from porphyria cutanea tarda with good outcomes. Expert care from a maternal-fetal medicine, dermatology, hepatology and metabolism specialist is essential. ...Read more

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Does porphyria affect my liver? Should I have liver tests?

Does porphyria affect my liver? Should I have liver tests?

Yes: Acute intermittent porphyria can affect the liver. You should talk to your doctor about what monitoring is recommended. ...Read more

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What is the difference between porphyria and photosensitivity?

What is the difference between porphyria and photosensitivity?

Porphyria: Porphyria is a genetic metabolic disease of hemoglobin synthesis which can cause photosensitivity, easy sun burning. Not all photosensitivity is from porphyria, drugs commonly lead to it as well. ...Read more

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When must I seek specialist help if I have porphyria cutanea tarda?

When must I seek specialist help if I have porphyria cutanea tarda?

Porphyria: Porphyria cutanea tarda always requires the help of a specialist since the diagnosis must be confirmed, the cause must be elucidated (hereditary, hepatitis c infection, or alcohol typically), treatment should be initiated, and preventive measures instituted. ...Read more

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Are there any good dietary supplements for porphyria?

Are there any good dietary supplements for porphyria?

Adjuncts only: The key to managing porphyria is educating yourself, learning how to avoid attacks, and becoming more familiar with your illness than a specialist physician. You can do this. The worst place to learn about porphyria is from people who are trying to sell you supplements, or blogs with testimonials that are likely to be misguided or even fake. Start with sites intended for physicians. Be discerning. ...Read more

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Does porphyria cause joint pain?

Does porphyria cause joint pain?

Not typically: There are small vessel obstruction so I would expect the pain to be areas and not joints. ...Read more

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What's porphyria?

What's porphyria?

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. ...Read more

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How does one get porphyria?

How does one get porphyria?

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). ...Read more

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Can men have acute porphyria?

Can men have acute porphyria?

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. ...Read more

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What cause a porphyria attack?

What cause a porphyria attack?

Porphyria results…: From lack of an enzyme in the path for making heme, the oxygen-carrying part of blood. There are many triggers for attacks:alcohol; smoking; drugs (barbiturates, sulfa antibiotics) phenytoin; progesterone; sun exposure; increased iron intake; chronic viral illness (hcv, hiv); stress (illness, emotional/ psycho-logical, physical); dieting/fasting. Http://www. Porphyriafoundation. Com/ for more info. ...Read more