We Are a Priority!

In conjunction with the global celebrations of the Epidermolysis Bullosa Awareness Week (October 25-31), Butterfly Wings Organisation for Palliative Care for Epidermolysis Bullosa Patients – known as Debra Jordan organised an awareness event on Saturday, October 26, 2024, which included several activities targeting people living with EB and their families.

"We Are a Priority" was the theme of this event, which was not only the organisation's first event but also the first time that Epidermolysis Bullosa warriors gathered in one place.

This awareness day featured many activities, where the organisation’s team conducted awareness sessions for patients and their families in several key specialties, including pediatrics, wound care, and therapeutic nutrition. This event provided an opportunity for attendees to learn about the organisation's services and how we help people with EB. One of the main objectives of the event was to bring together patients and their families from various governorates of the Kingdom, amplify their voices, advocate for their demands, and highlight their suffering. The organisation team also engaged in discussions, answered questions from patients and their families, and provided as much information as possible in response to inquiries.

The event gathered over thirty cases of both males and females, most of whom were children and infants. The organising team also welcomed new patients, introduced them to the butterfly Wings's services, and encouraged them to benefit from the available resources.

The purpose of this event was to highlight the needs of Epidermolysis Bullosa patients, raise awareness about the disease, and draw attention from the local community and relevant authorities, emphasizing that Epidermolysis Bullosa warriors are a priority and deserve the same attention as patients with other chronic diseases. These patients urgently need medical and awareness support. Epidermolysis Bullosa can become a life-threatening condition if symptoms worsen, and it is as significant as other chronic diseases. The patients truly need all possible forms of support. As the first local organisation dedicated to butterfly children, we will devote our efforts to fulfilling their demands, amplifying their voices, and ensuring they receive necessary medications and treatments through collaboration with relevant institutions until a cure is found.

This day also included free blood tests that covered essential minerals and vitamins needed by Epidermolysis Bullosa patients, such as iron, zinc, calcium, vitamin D, and others. Additionally, patients were gifted medical supplies kits containing the essential items needed for wound care, as well as an educational leaflet detailing the functions of various vitamins and minerals, their sources, and nutritional guidance to help patients maintain a healthy, balanced diet at all times.

Special thanks to our local channels Almamlakah TV & Roya for joining our event spotlighting our important efforts advocating for a better life for those who are suffering from the rare skin condition Epidermolysis Bullosa.