Porphyria

Frequently asked questions

My mother was diagnosed as having porphyria many years ago but has not had any symptoms since then. Why is this?
It may be that her disease has been quiet all this time. It is also possible that the diagnosis made back then was incorrect. Testing for porphyria many years ago was not as accurate and some people may have been labelled incorrectly.
When I look on the internet for information about safe and unsafe drugs different sites use different classifications and the lists are not the same. Why is this?
Information on the safety of drugs in porphyria is incomplete. Porphyria is a rare disease and many new drugs have been introduced in recent years. Thus it is often not possible to be sure that a drug is safe until it has been used safely in many patients with porphyria and this may take years to establish.