In early October, the URGO Foundation and the DEBRA Piel de Mariposa charity welcomed nearly 400 people directly or indirectly affected by epidermolysis bullosa (EB) to the Sol de Marbella hotel in Spain. Three days away from a daily routine marked by care and pain, to meet, learn, train, and share.
Learning and training
“These are very intense days in terms of information and learning, but emotionally, they also give us a lot of energy to continue our fight for several more years. “
— Lidia, mother of Leo, 11, who has EB
From October 3 to 5, every patient known to the association was invited to a warm getaway in southern Spain. While the children enjoyed fun activities and wellness sessions, their families participated in information sessions on the latest scientific advances and essential steps for caring for the painful wounds caused by the disease. DEBRA’s team of experts was on hand to answer individual questions and address concerns in a spirit of listening and sharing.
Socializing
Epidermolysis bullosa is not limited to visible wounds: it also causes internal complications (mouth mucosa, esophagus, larynx, anus, vagina, eyes, etc.) requiring specialized care from dermatologists, nutritionists, pediatricians, dentists, etc.
But the suffering is not only physical. The way others look at them, often with incomprehension or rejection, weighs heavily on butterfly children.
“What I don’t like is that people stare at us all the time. Some people have been very rude to us. It’s hard to be looked at with disgust.”
— Leo, 11
In this context, the Annual Meetings organized by DEBRA are a real breath of fresh air. They allow patients and their families to get together and have fun in a respectful environment, without fear of judgment. It is also an opportunity for them to share their personal stories, listen to each other, and learn from the experiences of their peers.
“We need to show more empathy, because asking questions costs nothing.”
— Lidia, Leo’s mom
A rare disease
Epidermolysis bullosa is a rare genetic disease.
It exists in different forms, developing various symptoms, including painful skin lesions requiring 1 to 4 hours of daily care, which exposes patients to the gaze of others.
In Spain, the incidence (number of new births per year) is estimated to be between 10 and 12 new cases per year. The prevalence (total number of people affected) is approximately 1,000 people in Spain.
The URGO Foundation is proud to partner with the DEBRA Piel de Mariposa charity in its work to raise awareness among institutions and the general public, and to provide training in best care practices to improve the quality of life of patients with EB.
