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Porphyria Cutanea Tarda
WHAT YOU NEED TO KNOW:
Porphyria cutanea tarda (PCT) is a disorder that causes skin to form blisters or lesions when exposed to sunlight. PCT is a form of porphyria, a disorder that affects how your body makes red blood cells (RBC). PCT can be genetic or caused by exposure to certain chemicals or infections.
WHILE YOU ARE HERE:
is a legal document that explains the tests, treatments, or procedures that you may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done. Make sure all your questions are answered.
A caregiver called a dietitian or nutritionist may talk to you about changes to your diet. He will also suggest liquids for you to drink. Your dietitian may also plan a special diet if you have a liver or kidney disease. You may need to eat special foods to help your body work well with PCT.
is a small tube placed in your vein that is used to give you medicine or liquids.
You may need any of the following:
- Antibiotics: This medicine is given to help treat or prevent an infection caused by bacteria.
- Anti-malarials: These medicines are mostly used to kill parasites. In PCT, anti-malarial medicines help remove excess porphyrins from the liver. Ask your caregiver for more information about anti-malarials as treatment for PCT.
You may have any of the following:
- Abdominal ultrasound: This test is done so caregivers can see the tissues and organs of your abdomen. Gel will be put on your abdomen and a small sensor will be moved across your abdomen. The sensor uses sound waves to send pictures of your abdomen to a TV-like screen.
- Blood, urine, or stool tests: Samples of your blood, urine, or stool are collected and sent to a lab for tests. These will check the levels of your porphyrins. Caregivers may also learn more about your blood with this test.
- Liver biopsy: A liver biopsy is when a small piece of your liver is removed and sent to a lab for tests. Caregivers will clean your skin, and you may be given medicine to numb (lose feeling) in the area. A needle is put through the wall of your abdomen or between your ribs. The needle is put into the liver and a small piece is taken out. A bandage will be placed over the area.
- Liver function tests: These blood tests check the enzymes (chemicals) and other substances made or broken down in the liver. Test results will tell caregivers how your liver is working.
- Skin biopsy: Your caregiver may need to remove a small part of your skin. This skin tissue will then be sent to a lab for different tests. Ask your caregiver for more information if you need to have a skin biopsy.
You may need treatments called phlebotomy. Phlebotomy is a treatment where a certain amount of blood is regularly removed through your vein using an intravenous (IV) tube. With phlebotomy, the excess iron is slowly removed to make the enzyme UROD work properly. This will decrease the porphyrin levels in your liver and blood.
- Treatment for PCT may cause side effects. Medicines may cause nausea, vomiting, headache, itchiness, slow heartbeat, or seizures. Phlebotomy can cause your body to lose too much blood, and this may lead to anemia (low RBC levels). Your health, quality of life, and ability to function may decrease without treatment.
- Untreated porphyria cutanea tarda can cause more problems. You may have frequent skin damage from sun and small injuries. This may cause skin ulcers, infections, bleeding, and swelling. You can develop cirrhosis or liver cancer.
CARE AGREEMENT:You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.