Canadian Association for Porphyria

Living with Porphyria

How will porphyria affect me?

People with porphyria should be able to lead full active enjoyable lives with a minimum of limitations or difficulties. Many people, probably the majority of those who are at risk for porphyria (i.e. carriers of a inherited gene defect), go through their entire lives with and never know they have this disease. They are called asymptomatic carriers and may be considered to have latent disease. A few people have repeated or intermittent attacks of symptoms separated by long intervals or remissions between illnesses. Unfortunately, a very few patients can become very sick and on rare occasions patients have died. Both the quality of life and the longevity are normal in most patients with porphyria, particularly if the precipitating and inducing causes can be avoided.

Source: This information originally appeared in a booklet written for the Canadian Porphyria Foundation: A Guide to Porphyria (1991) by Dr. Barry A. Tobe, MD, Ph.D, FRCP(C), Toronto, Ontario, Canada. The content has been updated by Dr. Brian M. Gilfix, MDCM, PhD, FRCPC, DABCC, FACB on 22/03/2015. 

Last Updated: 22/March/2015 

Medical Disclaimer

Care has been taken to ensure that the information on this website is accurate at the time of publication. This information is, however, intended for general guidance only and is not meant to substitute consultation from a recognized health professional. The Canadian Association for Porphyria/Association Canadienne de Porphyrie disclaims for itself and for the author of this information, all responsibility for any mis-statements or for consequences of actions taken by any person while acting on information contained herein. Physicians and patients must make their own decisions about therapy according to the individual circumstances of each case.

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