Follow my links and learn more about Porphyria. One of my major interests is the rare disease Porphyria. For some excellent links on Porphyria please see my links section at the bottom of the page. Porphyria is a rare metabolic disease of the heme pathway. There are approximately eight types. Most are genetic, but it can be toxically (chemicals) acquired. Not only is it rare, but rarely diagnosed accurately. It tends to mimic a wide variety of other diseases. My son Aaron nearly died from this disease 3 1/2 years ago. I also have this gene, and while I have never been as ill as Aaron, it explains a lot of my medical history. Aaron and I have Hereditary Coproporphyria. Anyone wanting more information about Porphyria please feel free to contact me.
I also run a email list about porphyria. Please email me if you would like to join.
Because of our sensativities to many chemicals and fragraces used in soap and toiletry sold commercially, I began my own soap business. To visit my soap site found at www.sudsbycheryl.com
One of the first people I met online who also had porphryia recently passed away from complications of porphyria and Hep. C. Please visit Mara Beth Toy's Memorial Page
Lastly please read my disclaimer at the bottom of my page.
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