• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

donate now

Before pregnancy

Before embarking on a pregnancy, a number of issues should be considered, and some preparations be made. Also with regard to your sex life, you will find some useful tips here.

Getting fit for pregnancy

If you are a woman with EB who is considering having a child, you might like to consider getting your body in the best possible shape before becoming pregnant. There is a lot of general advice available regarding this, including some GPs who offer prenatal guidance, and a midwife may run the latter service. If any concerns arise in this situation with regard to your EB, please ask the GP or midwife to contact your dermatologist or EB specialist (find national EB centres and experts: EB-CLINET).

In the context of EB you should ensure you have seen your healthcare team recently and checked the following:

  • Have your blood checked, particularly for anaemia.
  • Very importantly, check whether any of the medication you are taking will affect the baby; you may need to discontinue some medication and have substitutes for others.
  • If you have a form of EB where eating can be problematic, you might like to see a dietician to see how you can optimise your diet.
  • If your hands are affected by EB and you have contractures, you might like to consider planning hand surgery before you become pregnant. This is because handling a new baby requires a certain amount of manual dexterity, and also because you may not wish to be admitted for hand surgery whilst your child is small.
  • It will also be wise to speak to your EB team and your consultant before embarking on a pregnancy in order to consider whether there are any specific health issues you need to be aware of. If you are unable to speak to them before you become pregnant, you should certainly speak to your GP and EB specialist as soon as you are aware of a pregnancy.

To top

Planning on caring for your baby

This is something that parents often do not think about until pregnancy actually occurs. However, in the context of EB it may be worth giving this issue some attention before you embark on a pregnancy. Caring for a small baby is tiring and requires a lot of physical effort. This effort increases as the child grows. Alongside this are the difficulties presented by such tasks as nappy changing, making up bottles, anchoring car seats and opening folding pushchairs. If you can, it might be worth spending time with friends who have babies and children in order to closely observe the tasks required, and which ones, if any, are likely to present problems. Our experience to date is that most parents with the severer forms of EB, particularly where there is hand involvement, will need some help in caring for their baby. This might be the other parent, your own family or help obtained via social services. It is also worth trying to get in touch with another parent who has your form of EB. Although the challenges presented are unlikely to discourage you if you are committed to having a child, it is better to make the choice from a position of having a certain amount of knowledge of what lies ahead.

Becoming pregnant

Many adults who have one of the severer forms of EB are often concerned about their ability to have a normal sex life. With proper consideration this should not be a problem.

For women

For women it is important that you are properly aroused and time spent in foreplay will ensure the vagina is well lubricated before having sex – it's also more fun! Women have also told us that they prefer to abandon the 'missionary position' of the man on top in favour of woman on top, thus they can control the situation. Vaginal lubrication may also help although you should check that this does not contain a spermicide if you are hoping to become pregnant. You should also be clear with your partner about what might cause problems for your skin.
If you are not having periods regularly it is possible that you are not ovulating and therefore you will not become pregnant. In this situation you should discuss this problem with your health care team and see a gynaecologist.

For men

We have spoken to a number of men with EB who have an active sex live with few problems. Like women you should be clear with your partner about what you can tolerate and what you can't. On the whole, blistering of the penis does not seem to be a problem; however, using a condom (buy condoms with extra lubrication) will help if blistering does occur, until the blister heals. The condom is rolled on over an erect penis and as it is perfectly smooth and soft it will do no damage. Wait until the penis becomes flaccid before attempting to remove it. If you want to discuss any problems that may occur as a result of a sexual relationship, do not hesitate to ask your health care team.

To top