As an inherited disorder with no cure, epidermolysis bullosa (EB) is a lifelong condition.  Although its severity does vary from person to person, every child born with EB will face challenges that affect every aspect of life, including the family’s life. As a child grows the family will face not only physical challenges but often financial, social, and emotional challenges too.  A support network is vital for a family affected by EB to survive and thrive.

Physical challenges

The primary issue in EB is the fragile nature of the skin.  Anything that rubs against the skin has potential to cause blisters. From the beginning, parents of a newborn with EB must be careful with handling, diapering, clothing, and feeding their baby, to minimize pressure and friction on the skin. As the child grows, prevention includes making sure shoes fit properly, choosing appropriate clothing, and monitoring their child’s activities, to avoid rough play and even sweating, which can irritate the skin. On the other hand, children with EB still need daily exercise, which benefits overall health.

Taking care of a child with EB is stressful physically, with the usual demands of a meeting the needs of newborns and active children compounded by the need to protect the skin in every situation. Parents must also try to balance the caution necessary to protect skin from damage and allowing their child to live as normal a life as possible. During infancy, it can be a challenge to balance the need to protect the baby’s skin with the need for the baby to be held closely, important for both the baby and the parent.

Blistering and wound care

Even with careful attention to the skin, blisters will inevitably form, adding another layer of responsibilities. It is important to learn how to safely break blisters to avoid larger wounds, apply bandages to both protect the skin from blistering and to cover wounds to keep them clean and promote healing, and to change bandages daily, which can be painful themselves.

Nutrition

Some babies and children with EB have blistering inside the mouth and even the esophagus (the tube that carries food to the stomach).  Parents may need to use a special nipple to protect the baby’s mouth and make feeding more comfortable.  Some children may need to be fed  a special diet of soft foods such as soups or smoothies, making sure that beverages are always lukewarm or cool.  Children may need vitamin supplements, which will support wound healing and overall health.

Financial challenges

The special bandages used to treat EB are expensive, which can become a financial burden for the family. Parents may be able to coordinate with insurance companies to cover the cost of bandages. National EB support networks may be a source of financial advice.

Beyond bandages, other special needs of children with EB, including adapting living spaces and buying items that improve daily life can also be costly. Finally, depending on the severity of the condition, children with EB may require help from many different types of health care providers, such as physical therapists, nutritionists, surgeons, and possibly home health assistants, accumulating large medical bills. A social worker can play a vital role in coordinating needs and helping the family navigate the medical and financial systems.

Social and emotional challenges

Both the child and the family can feel isolated, as the condition requires much of their time, and can be a barrier to outside relationships.  The children in particular may feel isolated once they reach school age. As children enter school it can help to make sure the teacher and classmates understand what EB is, and the special needs the child might have so that accommodations can be made.

Making friends can be a challenge for many reasons. Not being able to participate in the same activities as classmates can lead to isolation, as can feeling like they stand out as a special needs child. Educating children and friends about EB is key—understanding what EB is and what living with it is like promotes acceptance.

Support networks

A family dealing with EB will need support from family, friends, health care providers, and other families who understand what they are going through. Health care providers may be able to  recommend support groups in the area that the family lives in. Online support communities are also an option to communicate with families from other parts of the world, to connect, share stories, and learn from others who are also living with EB.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lupus.