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I found out today that I tested positive for Porphyria...but my rhumatologist said that he has to run it by a porphyria specialist and said this could explain the GI problems i've had...which have been sever constipation and extremely slow motility and abdominal and intestinal pain.

Has anyone been diagnosed with this? Does this run with dysautonomia?

There are SO MANY different forms of it i have no idea which one i have becuase i wasn't told yet...any advice or info would be helpful. i've checked out http://www.porphyriafoundation.com/

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Here's one article linking porphyria and dysautonomia:


Here's the info from the causes page of the DINET site:

Porphyrias have been associated with POTS symptoms (Stewart & Hensley, 1981). Porphyrias are rare, mainly genetic disorders that affect the body's ability to make hemoglobin. They are caused by deficiencies in enzymes involved in the synthesis of heme. Porphyria patients are often overly sensitive to sunlight.

It is important for physicians to rule out porphyrias before prescribing medication to POTS patients. Some medications that are considered unsafe for porphyria patients are used to treat dysautonomia.

Other articles:


Diagnosis and management of porphyria:


Porphyria web links:


Merck manual: porphyrias:


Hope this helps!


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