Living with porphyria

Depending on the type of porphyria a patient has there are many precautions that can be taken to ensure life can be lived to its full potential safely and without pain. If a patient is knowledgeable about their condition, they are more likely to stay well.

If you have an acute porphyria (AIP, VP, HCP or ADP), attacks can be caused by certain medicines, so it is vital to ensure that medicines are safe. Learn more about the SAFE list.

If you have EPP or XLEPP, PCT or CEP (and also acute porphyrias HCP or VP), you may suffer from photosensitivity. It is therefore vital to protect the skin as much as possible.

A healthy diet and sleep regime is important for all, but it can be difficult to maintain when you have a medical condition.

For those with acute porphyria, contraception and pregnancy can require a little extra thought to keep the risk of attacks low.

If you are on a low income you may be entitled to extra help with health costs, such as prescriptions and glasses.

Applying for life or travel insurance can require a little more time and patience when you have porphyria.

Try our member tips to get the best rates and outcomes.