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Being pregnant

Iron deficiency anaemia

Iron deficiency anaemia is a common problem in pregnancy and of course in some forms of EB. If you have had time to plan your pregnancy you will be helped by ensuring you have had a blood test to check your haemoglobin and iron levels. If these are low, corrective treatment can be prescribed. In most cases oral iron will be prescribed. An iron infusion may be used in the severe forms of EB. It may also be helpful to see the dietician to discuss dietary sources of iron. Blood will be taken regularly during your pregnancy, and this may be a problem for some women with EB due to poor venous access. If this is the case you may need to have blood taken by an EB specialist and the results sent to the obstetric team. However, on the whole this has not been too much of a problem in the women we know, possibly because of the increased circulating blood volume of pregnancy that may make taking blood easier.

State of skin

On the whole reports, both written  and verbal present a mixed picture with the skin improving in some women and deteriorating slightly in others. Some women feel that pregnancy is beneficial to their skin. The appearance of the skin improves in most women, and this may be because your skin retains more moisture in pregnancy, and the effect of the increased blood volume can make you look pinker than normal – the so-called pregnancy 'bloom'.
You may find it helpful to wear loose fitting clothing made of natural fibres such as cotton or linen, as most women feel very warm in pregnancy, particularly during the later months.
The stretching of the skin of the abdomen has been thought to be particularly problematic for women with EB but this has not proved to be the case. Using a rich, bland moisturiser is claimed by some to reduce the incidence of stretch marks and it certainly promotes comfort.
For most women with one of the severer forms of EB, being overweight at the start of a pregnancy will not be a factor. However in those with the less severe forms being overweight may contribute to increased blistering during pregnancy. This is because the laying down of fat in pregnancy, in preparation for breast-feeding, may lead to the formation of skin folds where sweating, friction and consequent skin loss become a problem. This may be eased by the application of a thin layer of cornflour in the folds which reduce friction. You can also obtain dressings such as Mepilex Lite or Mepilex Transfer (Mölnycke) from your GP or EB specialist. These are very fine foam dressings that are coated with silicone, making them easy to remove from your skin, and can be used as padding in areas at risk of friction damage. Breasts also become heavier in pregnancy and some soreness may occur underneath them. Again the cornflour and the dressings as above will help. If you are able to wear a bra, you should be fitted for one that will support your breasts well with minimal friction. Bras with wide straps such as sports bras may be helpful, and many shops provide an expert fitting service. Later in the pregnancy you may need a maternity bra, this is particularly so if you plan to breast-feed.

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As we all know this is a particular problem in EB, and is one of the less glamorous side effects of pregnancy. This is due in part to the pregnancy hormones, which slow the passage of food through your digestive tract, and in later pregnancy, the pressure of the growing baby on your rectum. Oral iron medication can also add to these difficulties. You should aim to have this problem well controlled early in the pregnancy. You will benefit from seeing a dietician to discuss the use of fibre-rich foods and food supplements. Drinking plenty of water and juices will also help as will exercise, if your EB allows you to do any.
Some women develop haemorrhoids (piles) during pregnancy as a result of constipation. This is particularly unwelcome in EB as they add discomfort to an area, which may already be painful. Additionally, piles do bleed and can contribute to anaemia.


As you know, some drugs can affect the developing baby. It is therefore important that you discuss with your healthcare team which drugs are safe for use in pregnancy.

  • Many women with EB take Movicol, which is to be taken with caution in pregnancy. You should discuss the use of Movicol with your EB specialist or obstetrician.
  • Lactulose is safe for use in pregnancy.

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Morning sickness

Morning sickness can be a problem for many pregnant women in the first 3 months of the pregnancy and, contrary to the name, the nausea can last all day. Since the disaster with thalidomide in the 60ies, drugs are generally not given to correct this problem. However, because of the fragility of the oesophagus in some forms of EB, the effect of vomiting can be to cause further damage to the throat. This is due both to the force of the vomiting and the stomach acid. If this is a problem, you should discuss it with your midwife who will be able to suggest some simple remedies.

Some advice

  • Search for the topic 'morning sickness' on www.besttreatments.co.uk and find some useful tips.
  • Remedies include ginger, taking vitamin B12 or wearing an acupressure wristband.
  • Avoid strong odours, which many women find will bring on nausea.
  • A company called Mothers Bliss sells lollipops designed to reduce pregnancy-induced nausea; these are called 'preggie pops' and are available in ginger flavour.

If the nausea and vomiting is severe you should seek medical advice.

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Heartburn is the 'burning' feeling in the oesophagus caused by the reflux of powerful stomach acid up the oesophagus. This is a particular problem in some forms of EB, and vomiting can cause further oesophageal damage. This problem can be further exacerbated in pregnancy due to the effect of the hormone progesterone which relaxes the sphincter at the top of the stomach, allowing food and stomach acids to leak back up the oesophagus. In addition, the growing baby pushes the stomach upwards.

What may help

  • Sleep on two pillows
  • Avoid eating close to bedtime
  • Avoid coffee, rich foods and citrus fruit or juice

Some people with EB will be taking anti-reflux medication and/or antacids – you should discuss the wisdom of continuing these with your healthcare team.

Dental problems

There used to be an old saying 'have a baby and loose at tooth', and whilst this is not the case, you are more at risk of developing gum disease in pregnancy, which may lead in the long term to loss of teeth. The pregnancy hormones can cause the gums to swell and become more fragile, leading to bleeding. This is bad news for women with DEB and non-Herlitz JEB as they frequently have fragile mouths and gums. It might therefore be helpful to see either your own dentist or an EB specialist dentist in order to get your mouth in as good a state as possible.

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