The following anecdotes may be confronting for newly diagnosed people or people with latent Porphyria.

It is important to stress that most people who have the porphyria gene do not get to the stage of having frequent attacks.

It is perhaps better for them to concentrate on reading and learning prevention strategies, especially the basics:

• carry your unsafe drugs list
• don’t skip carbohydrates (eat rice, pasta, bread and potatoes)
• drink water
• get infections treated promptly
• minimise or avoid alcohol and cigarettes
• exercise and stress-reduction are also worth a mention

Of the prevention strategies, by far the most important is to find a pharmacist who will check all your medications.

If your doctor really wants to trial a risky drug, ask do it under a controlled testing regime.

For those of you dealing with active Porphyria, we hope the following experiences are helpful: