The Department of Social Services of Caritas Baby Hospital and in cooperation with the Dutch helping hands group carried out on Friday 28.04.23 a health day on Epidermolysis bullosa (EB). Around ninety EB patients, and their parents participated in this important event that highlighted the disease and the medical and social needs of this disadvantaged group.
EB or the butterfly disease is the name for a group of rare disorders that cause the skin to become very fragile. Children and patients with this genetic disease suffer from painful blisters as a result of any trauma or friction to the skin. The rare disease is usually diagnosed in babies and young children, as the symptoms can be obvious from birth. CBH receives normally the new cases immediately after birth as it is known in the area for the experience in handling EB patients.
In his welcoming speech on behalf of the medical director, Dr. Issa Abed Rabbo welcomed the audience. He also highlighted the important cooperation with the Ministry of Health (MoH) to fulfil the needs of the EB patients.
Dr. Raneen Al Bakri from CBH explained the disease for the audience from a medical and scientific perspective. She also clarified its different types of the disease according to their severity and shared the latest updates on the treatment.
From the Ministry of Health, the dentist Dr. Mohammed Balboul talked about maintaining the teeth health and hygiene for EB patients as they suffer from increased risk for developing dental caries. The dentist also promoted the accessibility to the MoH free dental services for this target group.
From CBH partner, helping hands, the experienced Mrs. Tinika tLam talked about the home care for EB patients, and the proper use for ointments and bandages to prevent possible infections in the wounds. Also, special techniques for bathing new born with the disease were shared with the attending parents.
The event also included clowns entertainment for the children, group counselling, dietary tips and blood tests for patients followed by distributing needed medications, ointments and bandages.
On behalf of the social workers team, department manager Lina Rahil confirmed the importance of this meeting as a platform for exchanging knowledge between affected families. She added “the psychosocial support for the affected children and families is on top of the medical treatment. It contributes to their wellbeing and existence”.
The families actively participated in this meeting and were very eager to learn about the disease. According to Samer Darabi’, father of two EB children “CBH team and the helping hands group answered many of our questions. They come for home visits, share the latest news and provide unavailable medications in the local market”. He added “We are no longer feel excluded because of the care and attention CBH team provides”.