Hope and Healing: wellbeing and mental health support for families in Romania

With the support of a grant from DEBRA International, a new mental health initiative was launched by Mini DEBRA Romania to improve the emotional wellbeing of individuals living with epidermolysis bullosa (EB) and their families. The primary goal of the project was to provide access to tailored psychotherapy sessions and structured support systems, helping participants navigate the psychological challenges that often accompany life with EB.

Through this initiative, participants were offered individual and family psychotherapy sessions with a licensed mental health professional. These sessions aimed to provide emotional relief, build coping strategies, and create a safe space for EB patients and their caregivers to share their struggles and strengthen their resilience.

A total of 19 psychotherapy sessions were successfully delivered, 11 individual and 8 family sessions, out of the 25 initially proposed. While some scheduling challenges arose due to participants’ personal commitments, particularly with preferences for weekend and evening sessions, psychologist Raluca demonstrated great flexibility and empathy, making adjustments to ensure that most participants could be accommodated.

The feedback from participants was overwhelmingly positive. At the conclusion of the project:

• 100% of respondents reported that the sessions were highly beneficial for themselves and their families.

• 91.67% appreciated the convenience and accessibility of the online format.

• A few participants expressed a preference for face-to-face sessions and many voiced a strong desire for the program to continue beyond its initial scope.

This project proved to be a vital step in addressing an often-overlooked aspect of EB care which is mental health. It offered not just therapeutic support, but also validation and connection for those who frequently face isolation, anxiety, and emotional stress.

Mini DEBRA Romania would like to express sincere gratitude to DEBRA International for funding this impactful project. Thanks to this support, significant strides were made in improving the wellbeing of members and demonstrating the importance of integrating mental health into holistic EB care.