A newborn with EB, or any suspicion of having the condition needs intensive care that extends beyond primary child care such as food, shelter and a stimulating environment.
Hygiene is essential for the physical health and well-being of the baby. By ensuring your own hands are carefully disinfected, you significantly decrease the chance of introducing harmful bacteria into your child’s skin.
Wound infection can occur if proper care is not taken immediately at the wound site.
Epidermolysis Bullosa is a condition that causes pain, however, a different course of treatment and medical interventions such as popping up blisters, dressing change, surgery etc. can cause additional pain.
Itching is an unpleasant skin sensation that occurs in many skin diseases. Itching is a huge challenge for people living with EB. The frequency and intensity of itching differs significantly in the different individual forms of EB.
Why is nutrition important in EB?
Every child needs to get a balanced diet to be well nourished to enjoy the best possible life. This is important for children living with Epidermolysis Bullosa (EB).
Eye care in epidermolysis bullosa
Ocular surface disease activity, particularly corneal, are common in Epidermolysis Bullosa, therefore, careful ophthalmologic examination should become an integral part of the management of all patients with inherited EB.
Oral and DENTAL CARE
Like the rest of the body, the oral, pharyngeal and oesophageal linings are intensively compromised by scarring and tissue shrinkage, especially in RDEB and JEB.
DNA is the building block of life that leads to formation of protein, cells, tissues, organs; that make up a healthy functioning body. We inherit our DNA from our parents, that is packed in genes.
Palliative care is focused on providing relief from the symptoms and stress of the disease. It comprises of a medical care team including doctors, pain management specialists, nurses, social workers, and therapists