Epidermolysis bullosa
Others
4. Adulthood and EB
Once adolescence is behind them, individuals with EB will face the unique challenges of adult life. In this section, we will discuss various recommendations for support and guidance.
Psychological considerations and accompaniment recommendations
Adults who have experienced secure attachment since childhood are better equipped to develop their self-esteem and personal values, allowing them to live healthily without needing constant reinforcement from others. This foundation also helps them cope with the stress and challenges associated with living with a chronic condition like EB.
It is essential to promote self-sufficiency and independence in young adults and adults with EB regarding their living arrangements (whether they wish to live more autonomously), mobility (such as obtaining a driver's license), economic independence, and emotional connections (with family, friends, significant others, etc.). Listening to their desires without falling into paternalism is crucial.
Given the current societal focus on productivity, appearance, and conformity, individuals with functional diversity often face exclusion from social relationships. For some people with EB, discussions about sexuality and intimate relationships may become taboo. It’s vital to foster an emotional education from childhood and adolescence that helps build healthy adults capable of establishing loving relationships in a safe, equitable environment free from violence, abuse, and discrimination.
While the obstacles in society are significant, it is important to find a balance between realism and idealism. The desire for romantic and familial relationships can be difficult for some individuals to fulfil, and the longing for intimacy can lead to associated challenges. Encouraging open and sensitive communication is essential, recognizing that difficult conversations may arise, and that everyone can benefit from professional guidance from various disciplines.
Occupational inclusion
An adult with EB should focus on promoting their strengths rather than dwelling on deficiencies. Job selection will depend on each person's social situation, context, and level of impairment or dependency. While there are many options available, they are not limitless. Factors influencing job choice can include educational attainment, individual personality, and specific abilities. It may be beneficial to seek guidance from occupational therapists or centres specializing in inclusivity and employability.
Once a job is secured, or even during the decision-making process, it's essential to evaluate the amount of time dedicated to the workday. Beyond the economic independence that employment provides, engaging in work, hobbies, or volunteering can significantly enhance self-esteem and personal satisfaction, especially in the context of a serious condition like EB. If the severity of the condition or dependency makes full-time work impossible—or any kind of work—it is important to consult with social workers to explore access to disability benefits.
In some cases, employment opportunities may be affected by the ability to use vehicles. While obtaining a driver's license may not present obvious limitations, individuals should have the same opportunities as others, provided they can choose an adapted vehicleand/or an electric wheelchair. Key adaptations to consider include: an interior panoramic mirror to minimize excessive movements while driving, a knob on the steering wheel to facilitate easier turning, the ability to steer with one hand, electric windows, automatic transmission, soft seats, automatic door locking, padded seat belts, and effective heating and air conditioning systems
It is important to have a reduced mobility parking spot in the workplace and, if it is not possible, a public one that is the closest possible.
Transition to the adult health system
As, thanks to the scientific advances, more children with complex chronic diseases reach adolescence and adulthood as time goes on, it is essential to support their transition from pediatric centers—where they have received care since birth—to adult facilities. This transition can have a significant impact, as important relationships with healthcare professionals and the pediatric care system are developed during childhood. Therefore, effective communication and planning for the transition process are crucial, ensuring that information is conveyed clearly and appropriately to each individual's understanding of how and when the transition will occur.
While primary care generally marks the transition from pediatrics to adult services at age 14, this can vary across regions and healthcare centres. In some centers, particularly tertiary hospitals, paediatric care may continue until age 18. Exceptional circumstances may delay this transition further, but it’s important to address it proactively to minimize any abruptness or trauma.
The social worker typically serves as the key coordinator for this transition. The process is often divided into three stages: initial (decision-making and planning), intermediate (preparing and informing the patient, family, and professionals), and final (the adolescent or young adult is transferred to adult services and is encouraged to take responsibility for their own care and decision-making).
During adolescence, some individuals with EB may exhibit a degree of resistance to following therapeutic recommendations. They might also refuse to attend check-ups to assert control over their routines and maintain their privacy. It is important to support and negotiate with them during these phases, ensuring a minimal level of monitoring to aid in the early detection of potential complications. In adulthood, it is recommended to maintain medical check-ups at least twice a year with a specialist or dermatologist to identify severe complications early.
Last modified
25 March 2025