Looking after yourself
Following diagnosis, most people with porphyria are able to lead relatively normal lives by following simple measures to prevent symptoms occurring.
With careful management, some patients are able to experience long periods of time without symptoms or enter remission.
To prevent acute attacks, it is sensible to avoid:
- taking or accepting medication without first checking that it is safe for you. A list of drugs that are considered safe in the treatment of porphyrias can be obtained from the organisations listed
illegal psychoactive drugs such as cannabis, ecstasy, cocaine, amphetamines and barbiturates
smoking and drinking alcohol
fasting or following diets that leave you low on energy.
Extra monitoring should be made during pregnancy, when oestrogen levels are elevated.
Wearing some form of medical identifi cation such as a medic alert disc will alert staff to your condition in the event of any emergency treatment.
People with cutaneous porphyrias should stay out of the sun as much as possible. Even exposure to bright light through the windows of a building or car should be avoided. When outside it is advisable to wear sun-protective clothing and heavy sun block containing zinc or titanium.
PCT, the most common skin porphyria, is linked with iron-overload and may cause serious liver damage if not regulated. You may be asked to avoid food rich in iron, vitamin C supplements and high dose oestrogen via contraception.
As is the case in anyone who has a liver condition, alcohol should be avoided.
Diet and exercise
There is no specific diet recommended for porphyria disorders other than eating healthily and making sure meals are taken regularly. This is more important for people who have acute porphyria as they are more sensitive to the effects of certain foods and beverages. This means keeping up a steady intake of calories by eating plenty of carbohydrates.
People who have acute porphyrias commonly suffer fatigue. This may be due to symptoms affecting muscles and joints (such as pain, numbness and weakness) and the sleep disturbance this may cause. In some cases the effects of medication used to control symptoms may contribute to bouts of tiredness.
It is important that your muscles do not get out of condition or reduce in size (atrophy). For this reason it is likely doctors will encourage you to follow a daily exercise routine or to take part in moderate physical activity a few days a week to keep your muscles in shape and to help you sleep better.
You can obtain more detailed advice about diet and exercise from the organisations listed under 'Who else can help?'