If you have Porphyria, how do you protect your skin?

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I have Porphyria VP & Cutanea Tarda. I have many facial eruptions, with virtually no sun exposure. I use Neutrogena (SPF100) & Solbar with zinc, together. When leaving the house I cover my entire face (double layered) with a sun protective "hat". Does anyone have any knowledge of this disease and what might I do to give me better protection. My dermatologist told me to never leave the house during the day, but sometimes, I just must. Thank you
It sounds as if you are being well taken care of. Occasionally, the ingestion of beta-carotene will also allow you to venture outside for a bit, as well as strict avoidance of alcohol and oral contraceptives.  (+ info)

Since its been sunny i have little dots on my hands with like a light liquid in them, what are they?

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I have been out in the usn alot and i noticed these dots appeared on my hands they kinda hurt a little and you can get this liquid out of them, but they are irritating and i want to know what there are and if they will go away? I found on the interent something called Porphyria cutanea tarda which sounds similar and is to do with the sun but i wanderd if anyone else knew anything useful?
It could also be an allergic reaction to something. I remember one of my children having a reaction to some meds and she got little liquid filled bumps in between her fingers and on her hands.  (+ info)

What is the scientific name for porphyria?

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I have to research the genetic disorder porphyria for Biology. One of the requirements for the project I have to do is to find the scientific name for the disorder. I tried looking it up on Google but couldn't find it so I was wondering if there actually was a scientific name for porphyria. Please give me the website in which I can find the scientific name (if there is one) if possible.
Porphyria IS the scientific name for porphyria. There are various types of porphyria (variegate porphyria, acute intermittent porphyria, etc.) but there isn't any other term to describe this set of conditions in common medical use.  (+ info)

What is porphyria? Is it related to vampirism? How do I know if I have it?

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My grandmother, mother, and I are very sensitive to sunlight and our heritage is from Transylvania. I sometimes feel like passing out when I don't get enough iron (and I am not anemic). I have always liked the taste of raw meat and blood. Does this mean I have porphyria or that I may be a vampire (if vampires exist).
u are not a vampire, lets get that clear.

What is porphyria?(copied and pasted)

Porphyria is a term that refers to a group of disorders—the porphyrias—that affect the nervous system or skin, or both. Each type of porphyria is due to the deficiency of one of the enzymes needed to make a substance in the body called heme. Enzymes are proteins that help chemical reactions happen in the body. Making heme involves a series of eight different enzymes, each acting in turn.

Heme is a red pigment composed of iron linked to a chemical called protoporphyrin. Heme has important functions in the body. The largest amounts of heme are in the blood and bone marrow in the form of hemoglobin within red blood cells. Hemoglobin gives blood its red color and carries oxygen from the lungs to all parts of the body. In the liver, heme is a component of proteins that have many functions, including breaking down hormones, drugs, and other chemicals and generating high-energy compounds that keep liver cells alive and functioning normally.

The body makes heme mainly in the bone marrow and the liver. The process of making heme is called the heme biosynthetic pathway. Each step of the process is controlled by one of eight enzymes. If any one of the enzymes is deficient, the process is disrupted. As a result, porphyrin or its precursors—chemicals formed at earlier steps of the process—may build up in body tissues and cause illness.  (+ info)

I Have Acute Intermittent porphyria Do you have it? Would like to talk to others with this disease?

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Would like to talk to others with this disease. I know it is a rare disease but it is effecting my everyday life.
Robbie, if you live in So. California, there's a good support group in this area. We meet twice a year and do our best to help each other feel less distant from other people. A rare disorder is not fun. I have VP and have experienced all kinds of mistreatment from MDs, etc. Nita  (+ info)

what's the difference between porphyria and Photosensitivity?

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I know I didn't spell those diseases wrong,
They are diseases of the sun, and I don't now the difference between them.
Give me differentiation please.
Thank You
Your spelling is refreshingly correct. Your question is a good one. And the short answer is that porphyria is a group of disorders which includes the other, photosensitivity, as a subtype. Photosensitivity is both a stand-alone condition and a subtype or symptom of several other conditions.

Porphyria is a group of enzyme disorders in the heme producing systems in the body, primarily the blood, liver and the bone marrow. The function of heme as a component of hemeglobin, the molecule which carries oxygen. The disorders are considered to be primarily genetic but can also be triggered or caused by certain medications, infection, alcohol, smoking, hormones/hormone changes during menstruation or pregnancy, illness, stress, fasting. Diagnosis can be very difficult.

Although there are many types of porphyrias, there are two basic types of porphyrias. While neither is curable, the Mayo Clinic says that there are treatments for certain types and lifestyle changes which can make some conditions manageable.

The first type affects the nervous system and symptoms include chest and/or abdominal pain, vomiting, diarrhea or constipation. While suffering an attack a person my feel muscle numbness, tingling, cramps, paralysis, personality changes, hallucinations, anxiety, seizueres, coma.

The other type is cutaneous tardive porphyria which affects the skin. The primary symptom is photosensitivity. This type causes the skin to be extremely sensitive to sunlight. Symptoms include reddness, rash, increased hair growth, scarring, infections, pigmentation changes, blisters.

Photosensitivity can be a symptom of porphyrias, it can be a trigger for conditions such as epilepsy, and it can stand alone as what is often considered an allergy condition or a drug-induced condition. It can also occur with cutaneous lupus. There are several medications (most of which have the warnings printed on the bottle or info sheet) which can trigger photosensitivity such as acne meds, tetracycline, St Johns wort (where UV exposure can trigger cataract development) It is not just strong, long sun exposure which can create the conditions for rashes, blistering, swelling. Winter sunlight, even reflected sunlight can trigger reactions in as little as 10 minutes.

Photosensitivity is defined by the American College of Rheumatology as "a skin rash as a result of unusual reaction to sunlight. According to Healthline, there are over 36 diseases, 24 drugs and several perfune and cosmetic components which can cause photosensitivity which they define as "any increase in the reactivity of the skin to sunlight." In addition there are several different types of reactions: phototoxicity, photoallergy and polymorphous light erruption (which causes those little bumps and blisters in a delayed reaction to UV exposure.)
I know this is long but I though that your question merited the long version.
Sources and suggested reading:
http://ghr.nlm.nih.gov/condition=porphyria
http://www.nlm.nih.gov/medlineplus/porphyria.html
http://www.mayoclinic.com/health/porphyria/DS00955
http://porphbook.tripod.com/12.html
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutdiagnosis.aspx?articleid=94&zoneid=15
http://www.healthline.com/galecontent/photosensitivity  (+ info)

Are people with porphyria proven insane?

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Are people with porphyria actually insane? Some mental disorders cooccur with porphyria which makes them seem insane, but I can't find out anywhere if they are insane or if that is just a deceiving concept of the mind.
Very Interesting question. I could discuss this issue with you for hours. I have a page saved in my Computer talking about this issue. I believe its titled Porphyria scams. Ill link it for you,
Good Day

http://business.gorge.net/zdkf/osd-psc.html  (+ info)

Does anyone have any experience with accute porphyria?

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My girlfriend has accute porphyria and I was just wondering if anyone has any advice to help her. She has done the blood tranfusions at Emory which helped out a lot. Any other idea?
That's a tough thing to have. It's great that you're supportive.  (+ info)

Can anyone give me some information about porphyria?

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This is a rare blood disease in which heme (a normal factor in our blood) is? This is not the skin form of the disease that I am looking for information on.
Porphyria is a rare blood disorder. It occurs when there is a disorder of the haem production pathway enzymes.

The wiki page is a good place to start.  (+ info)

Does anyone out there know about the disease Porphyria?

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I know quite a bit because I have it, but my doctors (even the one who finally diagnosed it) don't listen to me when I talk about symptoms such as severe abdominal pain, muscle pain and weakness, and severe numbness in my feet and ankles. I have read about a drug called "heme". Can anyone tell me what they know or have experienced? I am getting sicker and desperate.
Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other. A common feature in all porphyrias is the accumulation in the body of "porphyrins" or "porphyrin precursors." Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends upon the type of porphyria.

The clinical manifestations of the different types of porphyria are not the same. Forms of treatment also depend on the type of porphyria. Therefore, it is difficult to make general statements that apply to all these disorders.

The symptoms arise mostly from effects on the nervous system or the skin. Effects on the nervous system occur in the acute porphyrias. Proper diagnosis is often delayed because the symptoms are nonspecific. Skin manifestations can include burning, blistering, and scarring of sun-exposed areas.

The terms "porphyrin" and "porphyria" are derived from the Greek word "porphyrus" meaning purple. Urine from some porphyria patients may be reddish in color due to the presence of excess porphyrins and related substances in the urine, and the urine may darken after exposure to light.   (+ info)

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