The Municipality of Córdoba, through the General Directorate of Disability of the Secretariat of Social Policies and Human Development, held a special day dedicated to raising awareness about the Dystrophic Epidermolysis Bullosa (EB), or glass skin.
In this context, neighbors had the opportunity to listen to the story of the tiktoker and influencer. Julieta Maldonadoa young woman from Córdoba who lives with this disease.
Julieta, better known as “La Güera” shared her experience and provided an insight in an intimate talk about what it is like to live with this disease. With great emotion, I relate: “When I was a girl they told me that I was going to be practically useless, that I was not going to be able to do anything. But my grandmother, my aunts, my cousins, they always gave me things to do. Today, I can say that I am happy because I realized that I did many things alone, even work that I never thought I could do.”
“I was very encouraged when I went to live with my aunt because I didn’t even know if I was going to be able to live, and I discovered that she even cooked. I have many dreams like having my own house, publishing my book and launching my clothing brand,” he said.
See also: The emotional story of Juli that the Municipality spread on a very particular date
Glass skin is a rare genetic disease that causes blisters to form on the skin, even after light rubbing. In Córdoba, at least 73 people live with this conditionwhich represents a significant challenge for them and their families, according to data from the Debra and Prodanea Foundation.
Glass skin, identified with the color orange and butterflies, affects 2 out of every 50,000 inhabitants.
The panel was also made up of the kinesiologist and physiotherapist María Gabriela Ruiz Blanco, specialist in dermatofunctional rehabilitation and burns at the Santísima Trinidad Children’s Hospital, who spoke about the advances in the treatment and care of the disease.
“Making the disease visible is essential to breaking barriers and promoting understanding and respect for people with glass skin, as well as promoting actions that improve the quality of life of those living with this disease,” he highlighted.
“There is no worse disease than ignorance and fear, and many times as a society the biggest mistake we have is fear,” said Raúl La Cava, Secretary of Social Policies and Human Development.
“I still have faith that people are not bad, that people do not feel like discriminating, that what they do is simply done out of ignorance. There is a phrase that I just asked Mari, that I learned from the disability, which is, “nothing about us without us”, and I believe that Juli is the most faithful example,” he concluded.
To date, 34 workshops have been held, which means that just over one thousand eight hundred people have participated, heard first-person testimonies, and received tools and recommendations for better coexistence.
For her part, María Elisa Martinez Ottonello, General Director of Disability, highlighted that “Juli is part of the team with which we provide appropriate treatment workshops.”
“This conversation is very important because we continue working to raise awareness among residents of the city about everything related to disability and the pathologies that generate disability. It must be reinforced that, articulating with a health perspective, true rehabilitation is not complete without social, labor and educational inclusion. Being with her here and having her tell about her life means that Güera, her family and her environment of people are doing things well,” he concluded.
In turn, the Secretary of Health, Ariel Aleksandroff, celebrated the meeting and highlighted: “We are very demanding sometimes because we know the responsibility that we have to carry out, what we have to do so that others are better off, but what better strategy for our peers to be better?” communicating, bringing hope, bringing experience to others.”
“All these types of policies, this experience is much more academic, teaches much more, is more experiential and leads us to become much more aware.”
