Patients affected by epidermolysis bullosa - known as 'butterfly skin' - they need to follow a treatment that consists of applying dressings and antiseptic dressings on the lesions that the disease produces on the skin.
This is very expensive, because it is necessary to do the cures very often -every two or three hours-, so from the Butterfly Leather Association (DEBRA) they demand that these products be distributed free of charge, since many affected can not cope to the expenses that your treatment causes.
It is estimated that in Spain there are about 1,000 people affected by 'butterfly skin', which is characterized by the appearance of wounds and blisters on the skin
Nieves Moreno, president of DEBRA, has taken advantage of the celebration of the National Meeting of Affected Skin of Butterfly, to request that the 'right' of all patients with epidermolysis bullosa be extended to receive free of charge the dressings and bandages they need for their beware, since it is the case that even within the same community, in some villages the sick do not have to pay for them, while in others the patients themselves or their families must pay for them.
It is estimated that in Spain there are about 1,000 people affected by this disease, which currently has no cure, and is characterized by the appearance of wounds and blisters on the skin of patients. There are different types of 'butterfly skin' and in the case of the most serious - recessive dystrophic - patients have blisters from birth, their skin is extremely fragile, and they lose joint mobility.
The wounds suffered by patients, which can also develop in the mouth and esophagus, cause them much pain and increase the risk of suffering infections, as well as having a great psychological impact and isolating the patient socially.
Although unfortunately the disease progresses over time, many patients end up in a wheelchair, and their life expectancy does not usually exceed 30 or 40 years of age, experts say that progress is being made in the genetic and molecular diagnosis of This disease, which will contribute to the development of possible new treatments based on gene therapy.