Porphyria Support Group (NZ)

Disorders Covered:
The various types of Porphyria are:
ALAD Porphyria (ADP) or Plumboporphyria (PP)
Acute Intermittent Porphyria (AIP)
Congenital Porphyria (CEP)
Porphyria Cutanea Tarda (PCT)
Hepatoerythropoietic Porphyria (HEP)
Hereditary Coproporphyria (HCP)
Variegate Porphyria (VP) 
Erythropoietic Protoporphyria (EPP)

Porphyria described:
Porphyria is derived from the Greek word “purple” and originally referred to the red to purple colour of the urine of affected patients. Approximately 1 in 50,000 has the disease. Variations are normally inherited.

The six variations of Porphyria are all caused by the accumulation in the body of substances called porphyrins. This accumulation is generally the result of an enzymatic defect and blocks in chemical processes. The results can be mild skin problems through to seizures, severe abdominal pain, vomiting and constipation.

Sunlight and chemicals are the major factors in the display of symptoms.

To download a pamphlet containing more information, click here (pdf file; requires Acrobat Reader, which can be downloaded at this link) .

Links to the best online information about Porphyria:
http://www.porphyriafoundation.com for the American Porphyria Foundation
http://www.porphyria-australia.org/ for the Australian Porphyria Association
http://www.uq.edu.au/porphyria/ for an Australian information site for patients
http://www.cpf-inc.ca/ for the Canadian Porphyria Foundation

Support group aims:
Our aim is to support discovering and learning about Porphyria, its impact and effect on those with the disease.  We also hope to provide a bridge between sufferers within New Zealand.

Contact:
Brad Pearson
10 Muir Ave, Halswell
Christchurch 8025
(03) 3228877
porphyria.info@nzord.org.nz