Epidermolysis bullosa

Early adolescence (ages 12-16) is a stage of physical and psychological transformation, characterized by the search for identity and autonomy, often with a strong emphasis on physical appearance and peer relationships. During this time, adolescents may lose sight of potential risks and rebel against their condition, but they can also begin to take part in decision-making regarding their health. It’s essential to listen to them and encourage their participation in every aspect of their care 

In this stage, it’s important to promote critical thinking and gradually give them more responsibilities. This approach will help them become aware of the risks of making mistakes and encourage them to take responsibility for their own actions. 

In the area of sexual development, it’s essential to have open and honest conversations to provide accurate information. For boys and girls with EB, the physical changes of adolescence can lead to issues with self-acceptance, particularly due to the visibility of their condition and feelings of being different from their peers. This impact is especially pronounced when the condition affects more visible areas, such as the hands, face, or hair. Such visibility can result in differences or exclusion from activities, making it crucial to promote their self-esteem and offer alternatives that reinforce their self-image. 

It’s recommended to provide psychosocial support not only to the adolescent but also to the entire family, facilitated by a multidisciplinary support team. At this stage, establishing connections with others who have EB or other chronic conditions can be very beneficial, although the effectiveness may vary by individual case. Additionally, offering quality resources where they can find information about the condition and access safe spaces to ask questions and address their concerns is advisable 

Adolescence and young adulthood (ages 17 and up): Once they reach 16, minors are legally considered mature individuals capable of making autonomous health decisions. However, they still require support during this stage, as there is a risk of abandoning established treatments or habits from earlier stages. Additionally, they may be at risk for behaviours such as substance abuse, which can hinder their overall health and well-being. 

In this stage, mood alterations or variations may be observed. To provide appropriate family support, it’s essential to remember that they are no longer children, yet not quite adults; they require love and protection, as well as personal space. During this period, participation in community activities, sports, and healthy hobbies is particularly important, as are opportunities for artistic expression. It’s crucial to encourage their autonomy regarding wound care, health, and other aspects of their lives. 

The transition from school to high school is a significant change for all children, particularly for those with a chronic condition like EB. The increased demands for academic performance can be both motivating and frustrating, depending on each individual’s perspective. Without forcing them onto a specific path, it’s essential to listen to their aspirations and encourage them to develop their potential to the fullest. During this stage, they begin to seriously consider their future career options, which may confront them with societal limitations. 

It is advisable to support them throughout this process and provide individualized guidance. When discussing suitable job options, it’s important to consider the physical and/or psychomotor challenges associated with EB, without limiting their possibilities out of a desire to overprotect them or creating false expectations. Engaging with career counsellors can help them identify and assess their strengths, both locally and in other geographic areas. Additionally, considering their abilities, talents, and interests is crucial for making the best choices. With advancements in telecommunications, it’s increasingly feasible for adolescents to study or work in fields they are passionate about.