Ylenia reborn a little every day. Or, at least, his skin, subjected to the disease epidermolysis bullosa or butterfly skin. He evil causes him terrible pain over what could be third degree burns and that forces his mother, Jacqueline, to give him daily cures that have an average duration of three hours. Together they team up against the butterfly skin.
Jacqueline Perez Lugo He is representative in the Canary Islands of the NGO Debra, the only one at the national level that includes those who suffer from it and their families. Organize an event for next November 18 at the Infanta Leonor Auditorium in Los Cristianos, with the aim of raising funds for research. And, to do this, it is necessary to fill the 700 seats that they have at their disposal for the event.
In the municipality of Arona there are three cases of butterfly skin registered: in El Fraile, Valle San Lorenzo and Cabo Blanco. Three of a total of nine in the Canary Islands and half a thousand in Spain.
The day he came into the world, Ylenia and Jacqueline began the battle. “My daughter is seven years old,” explains the second one. She was born with raw wounds on her feet, which were third degree burns. The doctors did not know what she had while the girl suffered. It is a rare, degenerative and incurable disease that affects the skin, mucous membranes and also the mucous membranes that cover the internal organs,” she emphasizes.
Living with epidermolysis bullosa or butterfly skin
The technical name for butterfly skin is epidermolysis bullosa. A rare, genetic and incurable disease that causes great fragility in the skin. Debra explains on her website that, while most people live with a dermis with different layers, with proteins that are like glue, those who have this pathology do not have them. And that means that a touch or a cure can feel like an attack.
“We have been learning together, the health personnel and us,” the mothers and fathers of these children, although there are adults with the disease.
The pain is constant during changing gauze, bandages or cleaning wounds. And, of course, in the cures, which take an average of three hours. The cost of gauze, dressings, creams or shampoos is exorbitant. Several thousand euros per month if there were not, as there is in Spain, public health and social security, which cover 100% of expenses.
Psychological and work exhaustion
Of course, on the other hand, there is no one who compensates for the psychological exhaustion or the impediment that people have for Jacqueline to be able to work, since her life is dedicated to caring for Ylenia. “I can’t work,” she says, “because we don’t know what the day will bring with her.”
“Fortunately, everything our children need is 100% covered by the Government of the Canary Islands – public health -, from dressings to needles,” says Jacqueline, who assures that in the Canary Islands “there is no specialist, but the hospital The reference point is La Paz, in Madrid”, where they go “every four or six months”. “The check-ups are done here with a range of specialists who meet in the same room so that you only have to go up to the hospital once.” “The first specialist is the dermatologist, whom she would not change for the world because, when I have to make a cure, all I need to do is make her a call,” she adds.
For specific issues, such as rehabilitation, there are waiting lists. But Jacqueline considers that “like everyone has it and we understand it. Everyone has the need because they have needs and difficulties. You have to put yourself in other people’s shoes, in the same way that I want them to put themselves in my daughter’s. Public health is a necessity that anyone has the right to use,” she says.
Research has managed to make progress, despite the low prevalence of this disease, which means that funds are allocated to more widespread and frequent pathologies.
Jacqueline explains that “a topical cream is being worked on that creates greater skin resistance for people suffering from recessive dystrophic disease. And it prevents the skin from opening again until four or six months later.”
Also, according to information from the NGO, “from a genetically corrected skin fragment, sheets of healthy skin have been grown, with which 80% of the surface of the affected person’s body has been covered. During the year since the transplant, the child has not suffered the appearance of wounds characteristic of the disease,” he says on his website.
Four types of disease
The cream that Ylenia’s mother talks about would benefit those who suffer, precisely the same one that her daughter has, which “is one of the worst,” she says.
Epidermolysis bullosa is differentiated into several types. In the simple case, the blisters or wounds occur in the epidermis, the most superficial layer of the skin. The junctional is one in which the lesions appear in the basement membrane, the area located between the outer and inner layer of the skin. It is the least common of the four.
In dystrophic, the blisters and wounds are found at the deepest level, while the fourth type is Kindler’s, in which the formation of blisters does not take place in a specific layer of skin, but can form in several at once.
Thanks to CEIP Óscar Domínguez
Jacqueline has nothing but words of gratitude to CEIP Óscar Domínguez, located in the town of Arona, a school that has been adapting to the needs of students who suffer from butterfly skin disease.
“They have done everything possible for the students. It has been the school that has moved to us, that has provided specific transportation so that they can go and they devote themselves to absolutely everything, from the field trips. They have set up a bathroom for them, because they cannot share it, they have treatment materials, a nurse and they have adapted chairs, tables and even the dining room,” he explains.
All this in addition to underlining the importance of the event on November 18 at 7:00 p.m.: “We are butterfly skin.”