Epidermolysis bullosa

Caregivers of individuals with EB also need support and opportunities for self-care. Support networks—such as close and extended family, neighbours, and patient associations—are crucial for strengthening family unity and alleviating the burden of the disease on caregivers. 

One of the primary challenges families faces is discrimination due to ignorance. Therefore, it is essential to provide quality, tailored information for each developmental phase, enhance communication within the family to resolve conflicts and address fears, and promote social relationships and support networks. 

In terms of parenting, a respectful upbringing style is recommended to help foster security and self-esteem in children. Efforts should focus on negotiating challenging aspects, setting clear boundaries, avoiding punishment, and rewarding children’s efforts not only with material rewards but also by creating loving and enjoyable family moments. This can include spending quality time together outside of care routines, such as reading, playing, meditating, or going for walks. 

In some cases, the impact of the disease can have devastating consequences on the family unit. To prevent this, it is crucial to seek professional support for disease management and to strengthen positive connections. Offering spiritual support can also be important for creating meaning throughout the entire process of dealing with the disease.