Counselling plays a very important role in the treatment of patients with EB. The condition is in many cases degenerative, leading not only to physical disability, but also to social isolation. Patients and their families often need to contend with the distress of having to accept the diagnosis of a disease that has no cure along with the psychological repercussions of discrimination: low self esteem, stress, insecurity and lack of control which come from being surrounded by health care professionals who are inexperienced and unqualified to deal with the condition.
What is it like for families who are processing the consequences of a diagnosis?
The general feeling is one of blame, sadness and frustration. You have just had a baby born with a chronic, genetic disease, with no cure. Parents blame themselves for their genes. They have to very quickly learn how to become full time carers and they must learn new skills so that they can look after their baby. All of this creates uncertainty and fear, slowly the situation normalises and the process of acceptance begins.
The severity of the condition affects the whole family and this is why it so important to work with and support each and every member of the family from the very beginning.
The Debra Butterfly Children’s Charity employs a specialist psychologist to assist and support families and children from birth.
People need to feel, communicate and form relationships. Children with EB are limited not only by their physically disability, but by their thoughts and emotions and the fact that they must learn how to live with the condition.
Unfortunately the National Health Service does not provide any support services for patients with EB. Charitable organizations need to be available and have professional psychologists in place to offer this service. Our way of working means that we treat so much more than the surface of the skin. With the right help they can find a way to leave anxiety and uncertainty behind them.
To understand the process of how they feel physically and emotionally helps us to improve the quality of life for patients. Physical pain is very apparent, but suffering emotionally is a part of this. This can be as debilitating as physical pain; we are not only treating the physical, but also the emotional.
How do we provide this support?
Treatment is always very personal and caring, this comes from understanding and not victimizing people. We understand them and want to help empower them to deal with their situation.
It is important to be on hand from the birth of the child because of the emotional effects. With the arrival of a baby and the devastating diagnosis, parents often feel sadness, fear, uncertainty and guilt; they have so many questions and do not understand what is happening. My role is to help guide and support in order to relieve the intensity of emotions. We need to help them accept the situation and provide continued support throughout the different stages of their lives. They may have to make decisions based around having surgery, having a gastrostomy, accessing disability benefits, looking for work, or the decision to continue with education or not because of the effects of the disability and the discrimination they find themselves up against.
When we reach the moment where the situation becomes incompatible with life, families confront a new level of fear, what will happen next? How will it happen? DEBRA staff accompanies families in their own home and help them to deal with the strength of their emotions. We make this moment less painful by understanding the wishes of the families. We make sure they are able to choose where they want to be (at home or in hospital), that they do not suffer and that they are able to say goodbye.