Epidermolysis bullosa

Over 6 months. From this age on, the children begin to be a little less dependent, but they remain in a constant development , exploring the world around them with all their senses. At this stage, it is essential for them to establish a secure attachment, which is crucial for fostering their sense of security and self-esteem.

A secure attachment is built on respecting the child's needs and responding to their demands, especially during times when they require extra care. This approach involves providing both love and clear boundaries, helping them feel safe and valued. 

From the first year of life, it is very important to establish healthy habits and routines (skin care) with food, oral hygiene and early rest. When making the skin care we should include moments to control the pain and anxiety (distraction techniques, prevention and treatment of pain, offering support figures like “superheroes” to give confidence, etc.). 

In this early phase of life, families often require substantial information and support to feel confident in managing the disease. Professionals should place the family at the center of all recommendations, recognizing that the same guidance may not be applicable to every family. It is important to be flexible and adapt to each unique circumstance. 

 

During this stage of development, children's emotional relationships are primarily centred on their families, and their interactions with their surroundings are often egocentric, as they generally have not yet developed their capacity for empathy. It is common for them to ask many questions and to be very curious about the world around them. 

In this phase, it is important to foster their creativity through books and stories that encourage their imaginative thinking, which is often “magical” at this age. Given that care routines and the health environment play a significant role in their daily lives, this can be an ideal time to work on emotional management during treatment. 

One of the important milestones during this stage is the development of physiological control, particularly toilet training. If a child experiences issues such as constipation or injuries to the genitourinary tract or buttocks, this process can be delayed or complicated, leading to frustration for the child, depending on how it is addressed within their environment. 

During this stage, it's important to monitor for the emergence of recurring or excessive fears, separation anxiety, and uncontrolled behavioural disturbances (beyond typical tantrums related to setting boundaries). Establishing limits in a loving manner is a way to provide care and education, helping children as reference adults to develop their understanding of morality and what is right and wrong. 

In children with EB in kindergarten ages, as with the rest of the population of this age, the risk of domestic accidents increases. We should pay special attention to the beginning of crawling and the walking, as the risk of injuries also increases. During this phase, children with EB may experience heightened frustration levels, making it essential to provide emotional support to boost their self-esteem and self-concept. It is crucial to emphasize their strengths and intellectual abilities, especially in light of any potential physical limitations associated with the disease.

When it comes to information management at this age, it is important to explain skin vulnerability using simple language, enabling them to communicate their needs and condition as they begin school. This approach helps to foster a sense of security and gradual control. Additionally, having playmates their own age who respect and understand their condition is vital in preventing both negative and positive discrimination. 

 

Reaching this stage, thinking becomes more flexible and ordered and the children begin to match new ideas and concepts. Likewise, around 7-8 years they start to understand the death irreversibility and other loses, as it might be to understand the concept of the chronicity of diseases. On this stage reference figures like their teachers are still important. 

In terms of relationships with other children, it is very important to promote cooperation and team play, since at this age they begin to develop their empathetic capacity. 

During the cures, they slowly become more collaborative individuals, and it is important to listen to them at all moments, facilitating the possibility of making decisions adapted to their capacities to favour their sensation of control and participation on the cures.