ABOUT THE ORGANIZATION
Assist children with Epidermolysis Bullosa in Brazil
SOS EB Kids is a Project that started when a group of friends, made aware of the immense, lifelong suffering borne by patients of EB, felt they had to take action.
The Brazilian Constitution affirms that health is a basic civil right and a duty of the state. Unfortunately, this declaration does not represent a daily reality for many Brazilians and nowhere more so than for patients of EB. Treatment is expensive, complicated, inaccessible for many and, in some cases, wholly absent, the results of which can be life-threatening for these patients.
It is our mission at SOS EB Kids to ease the constant, daily struggle of patients with EB and of their families by raising funds to purchase supplies required for the expensive treatment of those whose treatment costs are not being covered by the government. Our principal focus is in helping children from the most underprivileged sectors of Brazilian society but is not limited to this group. Rather, we also seek to start a national conversation about this terrible condition via awareness campaigns and political activism around our cause.
We are volunteers in this effort, working out of love and dedication to this cause. No one from our organization receives financial compensation nor possesses any political interest in this issue, our only motivation being our desire to see Brazilian patients with EB cared for, free and living with dignity.
SOS EB Kids maintains no links with political parties nor with any religious institutions. We do not judge, we do not pressure and we do not expect anything in return for the supplies we donate. We are an independent Project based on a sense of solidarity alone, moved exclusively by compassion and by love for our fellow citizens.
Epidermolysis bullosa (EB) is a rare and serious genetic illness, non-contagious, for which no cure has been found and it is characterized by acute sensitivity in the skin and mucosal membranes. Patients with EB develop blisters and sores in response to the minor types of skin trauma, a mere touch upon or pressure to their skin, or even just changes in weather. These lesions can be both external and internal and can appear inside the mouth, in the esophagus and the rectum. Patients of EB are affectionately referred to as “butterflies,” a reference to their fragile skin.
Friction causes blister formation. Blisters can form anywhere on the surface of the skin, within the oral cavity and in more severe forms may also involve the external surface of the eye, as well as the respiratory, gastrointestinal and genitourinary tracts. In some forms of the disease, disfiguring scars and disabling musculoskeletal deformities occur.
Currently, there is no cure for EB. Supportive care includes daily wound care, bandaging, and pain management as needed.
The SOS EB KIDS Project assists kids from different states of Brazil. We aim to provide them with dressings and other supplies they need to ease their daily struggle.
Our mission is to alleviate the suffering of brazilian kids with EB, increasing their quality of life and that of their loved ones, whether through material and emotional support or through information and awareness.