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.

Drug safety

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.

Skin safety

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.

Diet and sleep advice

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

Looking after your mental health

Living with a rare disorder or coping with circumstances beyond your control can have a detrimental effect on mental wellbeing and leave you feeling overwhelmed.

Contraception and pregnancy

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

Help with health costs

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

Getting insurance

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.