Na Luz de Nalú (In Nalú’s Light): Parental Care and Therapeutic Ointments in the Treatment of Patients with Epidermolysis Bullosa
Luísa Cerdeira (2008), Luiza Doin (2008)
Colégio Dante Alighieri, São Paulo, Brazil
Epidermolysis bullosa (EB) is a group of rare genetic diseases affecting approximately 500,000 people worldwide. It is characterized by extreme skin fragility, leading to blisters and wounds caused by friction due to defects in the proteins that bind the epidermis to the dermis. The condition manifests at birth and varies in severity, with four main types: simple, dystrophic, junctional, and Kindler.
This project was inspired by Nalu Leite Verdier, who was diagnosed with epidermolysis bullosa at birth, and aimed to analyze parental care in Brazil and the challenges faced by families in phase one, while developing an ointment for wound treatment in phase two. In the first phase, a questionnaire was distributed to family members of patients with epidermolysis bullosa to assess socioeconomic factors, caregiving practices, and daily challenges. Responses from nine participants revealed that all four main types of the disease were present among the patients. Most families reported spending between R$ 1,000 and R$ 2,000 per month on dressings and psychological treatments. The primary challenges identified included prejudice, uncertainty about the future, family acceptance, and daily difficulties. Additionally, a variety of treatments and ointments were noted, primarily commercial products.
In the second phase, the project will focus on selecting mostly natural ingredients to develop an ointment with anti-inflammatory, healing, and soothing properties, aiming to provide an affordable alternative for affected families.
