What is Porphyria?

The porphyrias are a collection of disorders of haem synthesis, each resulting from a separate enzyme deficiency in the pathway.

• Broadly, the build up of haem precursors cause neuro-visceral problems and /or skin reactivity to light.
• Active Porphyria is extremely painful and can be very debilitating.
• The porphyrias can become progressive degenerative disorders.
• Currently the main aim is prevention strategies to keep them latent.
• Once triggered an episode can escalate into a biofeedback loop causing toxic build up of porphyrins.
• Porphyria has been mistaken for: somatisation disorders, Guillain Barre, growing pains, eczema, epilepsy, MS, dermatology, depression, acute appendicitis, chronic fatigue, Parkinson's, Irritable Bowel syndrome and many, many more.

A list of Safe/Unsafe drugs can be found via the menu on the left.

For more ideas or information on relevant journal articles on Porphyria: e-mail porphyria@mssociety.com.au
or telephone: (03) 9845 2737