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How do I know if I have Porphyria?
What signs or symptoms may make you suspect you may have Porphyria. People who have experience in Porphyria offer advice of what things may make you suspicious and which doctor you should go to to receive treatment
Continuous abdominal pain without any explanation was my main problem. Itchy skin and blisters occur on exposed areas. I also experienced extreme agitation and nervousness, which is not really part of my personality. A GP can successfully walk the road with you.
Posted Jan 12, 2018 by Mari Blignault 1500
BY A GENETIC TEST, IT IS THE BEST AND 100% SURE
Posted Mar 30, 2019 by Marie 2500
Skin manifestations, small clear fluid filled blisters which develop on the back of the hands or areas of the skin exposed to sunlight. When the blisters burst they will leave purple like scars. Lesions are slow to heal, skin is sensitive to light, may itch or swell, burn when exposed to light.
Other neurological symptoms may occur, sometimes this may be in the form of unexplained abdominal pain , other areas of the body may experience extreme pain, such as back, limbs, chest, etc. Muscular weakness, loss of co-ordination and balance. Oftentimes this will be multiple symptoms combined with anxiety, confusion, depression and seizures.
Your doctor should run tests for Poprhyria, make contact with a porphyria specialist or unit and obtain information on what tests to undertake and the procedures required for transportation of the test samples to the laboratories.
Testing or urine, plasma and stool are necessary in the diagnosis of Variegate Porphyria. The samples must be protected from light which can compromise the test results by sealing them in foil protective bags or foil wrapping.
Your General Practioner or Primary Practioner should be in contact with specialised Porphyria units or clinics and should consult with these specialists on the procedures required and protocol. A dermatologist can advise on skin care (should they be aware of Porphyria) and how to take care of the skin.
Other specialists are involved in the different areas as in the case of VP, all organs of the body are affected which would involve several teams.
DNA testing is also one way of testing for porphyria however then one would need to have an idea of the type of porphyria to run the DNA tests.
Other neurological symptoms may occur, sometimes this may be in the form of unexplained abdominal pain , other areas of the body may experience extreme pain, such as back, limbs, chest, etc. Muscular weakness, loss of co-ordination and balance. Oftentimes this will be multiple symptoms combined with anxiety, confusion, depression and seizures.
Your doctor should run tests for Poprhyria, make contact with a porphyria specialist or unit and obtain information on what tests to undertake and the procedures required for transportation of the test samples to the laboratories.
Testing or urine, plasma and stool are necessary in the diagnosis of Variegate Porphyria. The samples must be protected from light which can compromise the test results by sealing them in foil protective bags or foil wrapping.
Your General Practioner or Primary Practioner should be in contact with specialised Porphyria units or clinics and should consult with these specialists on the procedures required and protocol. A dermatologist can advise on skin care (should they be aware of Porphyria) and how to take care of the skin.
Other specialists are involved in the different areas as in the case of VP, all organs of the body are affected which would involve several teams.
DNA testing is also one way of testing for porphyria however then one would need to have an idea of the type of porphyria to run the DNA tests.
Posted Oct 5, 2021 by Carollynn 5770
