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Giving birth to a child with EB is like a bereavement, some of the feelings and behaviour a family may feel are

· Shock and Disbelief
· Anxious and panic stricken
· Guilt
· An overwhelming sense of loss and sadness
· Depression
· Anger and rage
· A sense of injustice and envy of those who aren't suffering
· Irritable, tearful and exhausted

Therefore psychological and social work support are very important aspects in the continuing care of a child born with EB


Largely ignored in the UK, family health history is a national obsession in the USA. The medical profession has stressed the importance of knowing your family health history. The more information each person can collect the more useful it will be in health prevention and promotion.
Counselling touches very deeply on human emotions of guilt, grief and fear and on deeply felt moral beliefs. A diagnosis of a genetic disease such as EB can have a very different meaning to different people.

Janice's e-profile.....click to view

Rome , New York and Toronto united for the "Butterfly Children".
At the Tempio di Adriano yesterday evening a charity gala for 200 organised by Laura Rossi the first edition of "Tomorrow Think of Me" took place, an event to raise international funds for Debra, the association for the research into Epidermolysis Bullosa, a rare genetic skin disease which in the most severe cases makes the skin as fragile as a butterfly's wing. Three cities were involved, united together for the same cause represented by their most important institutions. In Rome the mayor Gianni Alemanno, Eleonaora Abbagnato the godmother of the initiative as well as Franco Di Mare and Vincenzo Salemme were present. The evening was launched by the Lithuanian violinist Saule Kilaite and singer songwriter Simona Molinare. The highlight of the evening was the satellite link between Rome and New York with the mayor of New York Tom di Napoli. Professor Giuseppe Profiti, the president of the Paediatric Hospital Bambino Gesu in Rome, announced that finally a specialist room, the first one of its kind in the world , has been set up specifically for the needs of " Butterfly Children" , thanks to the joint efforts of a year of fundraising by the Hospital Bambino Gesu and associations dedicated to this project.

Sunday 24 April 2005 Stockholm
Relationships EB and Pregnancy
Presenter Janice Carrera & Liz PillaySenior EB Nurse specialist for Adults (DebRA UK)

When a child with EB is born it affects the relationships within the immediate and extended family. There is often a feeling of loss and grief and the family’s hopes for the future.

One of the first questions a family asks me is "will my son/daughter be able to have normal relationships with the opposite sex – will they be able to marry and have children of their own?"

Our protective feeling towards affected children may prevent them from enjoying normal experiences, which lead to a healthy cognitive and emotional development. Social isolation may set in as families lose contact with friends and the community becoming preoccupied with EB and shutting out normal experiences.

Mothers must learn to accept outside help as soon as possible so that they are not just looked on as the main carer and a more healthy relationship can develop within the family.

This is why we firmly believe that people with EB, however severe, should have the widest possible experience of everyday life with all its ups and downs.

A major problem is that statistics show that often the parent’s relationship has failed due to the pressure of bringing up a child with EB so there is no role model of a "normal" family unit whatever that means.

Towards puberty a teenager with EB has all the same thoughts and urges as their non-affected friends and these should be encouraged not suppressed. If they start having sexual experiences the usual contraceptive advice and help should be offered as is to all their peers.

Often a rebellious streak sets in, the EB Teenager perhaps trying to have more sexual experiences just to prove that they are like their friends. They often hide the fact that they are having a relationship. Parents are often horrified when it is revealed so require a lot of support themselves. They are fearful that their teenager will be in danger, especially of skin damage. When the new relationship becomes permanent there is often a sense of loss as they feel their caring role may be diminished and taken over by the new partner. However it is most important that the partner does not become the nurse.

When the EB daughter becomes pregnant there is an even greater fear of the future. We now have experience of several people with EB who have had successful relationships.

Becoming pregnant, giving birth and caring for a child are normal aspirations for most young people, as is the experience of being in a loving sexual relationship. In the past those with the severer forms of EB were often, for various reasons denied this experience. Over the past few years some of the young men and women we have come to know, who have relatively severe forms of EB have achieved happy relationships with a normal sex life. As a result of this we now know women who have become mothers despite their EB, and for some despite advice given by both professionals and their own families. In the UK (and indeed globally) we now have a number of women with RDEB who have successfully given birth to healthy babies, both by caesarean section and normal vaginal delivery. We also know men with RDEB who have become fathers to healthy children. Participating in a sexual relationship, becoming pregnant, giving birth and subsequently caring for a child when you have a condition such as RDEB is not without anxiety for all concerned. Concerns are often expressed by the person with EB, partner’s families and the medical team. Many of these anxieties can be overcome by the provision of information and the sharing of experiences. We aim to share some of these experiences with you this morning and hope you will be able to participate.

There was then an interview shown of 2 ladies from the UK who have both had successful pregnancies. They spoke about their concerns and fears during the pregnancy and labour, the good and the bad.

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