Diet and sleep advice

Maintaining a healthy diet

A balanced diet is vital for good health and well-being. Food provides our bodies with the energy, protein, fats, vitamins and minerals to live and grow properly. We need a wide variety of different foods to provide the right amounts of nutrients to our bodies to ensure we function well. Complex medical conditions make it all the more important, despite the fact that it may be more difficult to achieve.

A healthy diet includes at least five portions of fruit/vegetables a day, protein, carbohydrates and a small amount of fats. There are very few foods that people with porphyria need to avoid, so try to eat as broad a range as possible.

In terms of acute porphyria, low calorie diets, such as those used to reduce weight, or prolonged periods with little food may provoke attacks. It is therefore important to keep to a normal diet with regular meals, eating enough to maintain a desirable body weight. At least three regular meals should be taken each day. Some people, particularly women with pre-menstrual problems, may find it easier to eat small meals every three hours rather than three normal sized meals.

Alcohol

Most people with a porphyria could probably benefit from avoiding alcohol, but each for different reasons. The exception seems to be CEP, which doesn’t seem to be worsened by it.

People with EPP/XLEPP don’t need to avoid alcohol, but they can develop liver problems which are made worse by alcohol, a factor to be aware of. A few patients also report that phototoxic reactions are more likely after drinking alcohol.

Those with acute porphyria (AIP, VP, HCP and ADP) should be very cautious with alcohol as it is a common trigger for acute attacks. This is particularly important for those who have had attacks in the past. Even if you have not had an attack, it is still safest to avoid alcohol. If you do decide to drink, keep intake low.

Those with PCT will need to follow the advice of their consultant, as the trigger for sun sensitivity depends on the individual. (Alcohol is the most common.)

Nausea and sickness

For many acute patients, sickness and nausea in particular are a daily problem. Most patients will have their own remedies for dealing with these times, but detailed below are some helpful hints and tips.

Eat small and often: If you can’t face food, and you know that you will suffer with abdominal pains, eat a small amount of food every two to three hours. This will stop your stomach being completely empty which can increase nausea.

What should you eat? Eat easily digestible foods, but predominantly carbohydrates. For example: bread, cereal, porridge, rice pudding, yoghurt, milk shakes made with bananas and milk, Avoid acidic foods and fruits, and try some nuts and seeds, such as pumpkin seeds for their calories, vitamins and minerals. Coffee and tea are best kept to a minimum; drink plenty of water to keep you hydrated.

How much should I eat? This depends on how nauseous or sick you are. Start very small, perhaps half of a slice of bread with a small amount of butter or a couple of teaspoons of yoghurt, and then try to gradually increase the amount each time. You should be aiming to consume in the course of a day the same amount of food that you would if you were only eating 3 normal sized meals.

Herbs and infusions: Try cutting up a half-inch piece of root ginger and infusing it in a mug of hot water. Leave for 5 to 10 minutes and then sip. If you wish to make it more palatable add a small teaspoon of honey to sweeten it. This infusion can be taken throughout the day. Flat ginger beer will also ease nausea.

Try an infusion of basil leaves in hot water: a natural tranquilliser. It is said to be a tonic and to calm the nervous system, aid digestion and ease stomach cramps and nausea. If you are being very sick, try making up a glucose solution to drink. Powered glucose is available from your local chemist.

Constipation

This can be a common problem for a lot of patients, which if left, can lead to bloating, flatulence, nausea, sickness, bad breath, haemorrhoids and even more serious bowel complaints.

Try some of the remedies below:

Eat small and often: This will encourage your body to work almost continuously in the process of digestion. Try small meals every two to three hours.

Drink water: For good digestion and peristalsis (the movement of your bowels) drink 4 to 6 pints of water a day. This will help to keep you hydrated and keep your motions soft and easy to pass.

Eat plenty of fruit and foods containing fibre: e.g. green vegetables, broccoli, cabbage; also beans, pulses and small amounts of dried fruits. Keep your foods as natural as possible. Avoid processed foods. Aim to eat at least five portions of fruit and vegetables a day.

Make time for going to the toilet: This may sound a strange thing to say, however many of us lead hectic lives looking after the family, working, housework, shopping etc., and find little time for ourselves. Never put off the need to go to the toilet.

Natural remedies: Fresh pineapple contains a digestive enzyme called, bromelain. This helps to digest proteins and speed along the process of digestion. Tinned pineapple will not have the same effect, as the bromelain is lost in the canning process. Eat one or two slices of pineapple each day and you should see some improvement.

Exercise: Regular physical activity can reduce constipation. Walking is one of the best forms of exercise. Try to do some form of exercise every day for at least 20 minutes.

Internet fables

According to some sources, there are a lot of foods that people with porphyria shouldn’t be eating. There is no evidence that food or drink will trigger acute porphyria symptoms, except for alcohol.

As with any illness or discomfort, don’t assume (or let your doctor assume) that anything new is always due to the porphyria. Some people with a porphyria also have food sensitivities or allergies (just like those without a porphyria). If you’re not sure of the cause, cut out one thing at a time from your diet. Then eat some again and see if the symptoms return. If that wasn’t the cause, try cutting out something else.

A food diary may help if it proves difficult to track down. Note what you eat each day and when you feel bad. It may also be worth noting where you go. Noting where you’ve been may be enough to give you a clue to the cause.

The internet is a very useful source of information, but do use it with caution – try to find reputable websites. Unscrupulous people may try to sell you ‘cures’ which do nothing. Others may simply misunderstand evidence and perpetuate myths. The BPA was founded to give you reliable information so, if in doubt, do contact us. We are in contact with a wide variety of porphyria specialists, so if we don’t know the answer to your question, we should be able to find out for you.

Eight tips for better sleep

Whether you have a skin porphyria or an acute porphyria, sleep can be disrupted for many reasons – but usually pain of some sort. During these times sleep may be impossible even with pain relief. However, even when not in a crisis, members often complain of poor sleeping patterns and a feeling of being ‘tired all the time’. You could try some of the suggestions below to improve your quality of sleep.

1. Mattresses should be changed at least every 10 years. Quality deteriorates by up to 75%. Make sure you have the right mattress, test prospective beds by lying down in your normal sleeping position.

2. Cut out coffee. Reduce your intake of stimulants, including teas, coffee, cola and other caffeinated drinks, especially in the evening. Stick to milky drinks instead. More than one or two units of alcohol will also impair your quality of sleep.

3. Exercise more. Moderate physical activity lasting 20 minutes or more, three times a week, will help you sleep better and give you more energy. Because exercise is a physical stressor to the body, the brain compensates by increasing deep sleep. Light activity early in the evening is best.

4. Meditate. Use visualisation or meditation or relaxing music to help you get off to sleep.

5. Keep cool. Bedroom temperature should be below 24C (75F) over this would greatly reduce the quality of your sleep.

6. Try not to worry. Try to deal with your problems during the day. Confronting each difficult issue as it occurs should prevent all those niggling troubles from surfacing while you are trying to sleep. Or write a list so that you know what issues you need to deal with the next day.

7. Eat well. Certain types of food promote good sleep. Things such as leafy green vegetables, steamed or boiled; whole grains, mushrooms, and fruit. Avoid overly-rich foods just before bedtime.

8. Get up. If you can’t sleep, don’t just lie there, get up and make a hot milky drink, read a book or listen to soothing music until you feel drowsy again. Return to bed when your eyelids start feeling heavy and you start yawning.