It requires genetic testing and it still does not explain or help with anything.
There's inherited PREDISPOSITION to Porphyria, as any one of the 8 enzymes needed for the synthesis of heme, may be deficient.
"However, the enzyme deficiencies alone do not produce disease. Additional factors determine whether or not there will be disease manifestations."
Source: American Porphygia Foundation
The other type is acquired, mainly due to deficiencies developed in various
biochemical and metabolic pathways of enzymic activity for heme synthesis, rendering precursors of heme, unsynthesized in the body, thus offering the possibility of triggering Porphyria symptoms, but only with the presence of additional factors, as stated previously.
So any genetic testing, may NOT be conclusive due to the lack of exclusivity.
Please refer to my earlier post for further insight.
A return to balance in the body, mind, psyche and spirit,
IS the ultimate treatment.
Blessings,
Niko
Maybe this is possibly what I have, I have never heard of it. How do I learn about this?
Hi,
How are you? Porphyria is a term that refers to a group of disorders affecting the nervous system or skin, or both. Each type of porphyria is due to the deficiency of one of the enzymes needed to make heme, which is very important in the body. Indeed, it would not be easy to diagnose especially if the family history of your birth parents are not known. Most porphyrias are inherited disorders, so it is best that you have your daughter tested as well. There are many triggers for porphyria and you should also avoid your triggers. Diagnosis with blood, urine, and stool tests are done. But interpreting test results can be complex, and initial tests may be followed by further testing to confirm the diagnosis. Take care and do keep us posted.
Thank you for answer. Watched show. Was a shock. He told my story. Except have been seeing doctors for 11 years. Teen daughter has weird disconnected symptoms too. Think we both need genetic testing. With "all my health problems" I am on a dozen meds...SCARY. I am adopted so don't know history,I am in the NW and Ultraviolet light is HARD to come by...just ask me about Vitamin D. Maybe we will have some good sun tomorrow. We are supposed too. Not sure if I am in acute phase or not. So we will see. The purple panties are telling.
I saw that show too. It is an inherited disease - has anyone in your family had it?
I would follow through, do the test, and then follow through with the genetic testing etc. There are specialists in the disease that you can contact.