The Butterfly Skinwhich celebrates its International Day this Friday, October 25, is a very rare, natural, painful and incurable disease. The disease causes severe weakening of the skin and mucous membranes, which are the tissues that cover the body’s organs.
To where more than 500 have been affectedaccording to the source data DEBRANGO dedicated to Butterfly Skin, their skin peels off at the “slightest” touch.
These blisters and sores, which sometimes do not close at all, take several days to heal. The disease got its name because the skin of these people is as fragile as a butterfly’s wings.
Although in Spain there are about half a thousand patients, ““One in every 227 people carries the mutation that causes the disease.”. In particular, it is the skin-related genes, such as collagen or keratin, that cause the production of skin proteins.
Its official name is unknown: Epidermolysis bullosa (EB). Worldwide, this number is estimated to be 1 in 17,000 to 50,000 live births, and the number is 1 in 100,000 people. Therefore, rare and invisible diseases.
Butterfly skin has physical symptoms such as blisters and sores / Mostafemeraji / Wikimedia Commons
What are the symptoms of Butterfly Skin?
The physical symptoms are very obvious.
People with butterfly skin They have to build their body every day so that the wounds and blisters don’t get infected. in their daily life. Other treatments that, experts emphasize, are very painful and last between one and four hours.
Butterfly skin is caused by a genetic mutation / Medical Photographic Library
In addition to dermatological effects, epidermolysis bullosa can also have other physical effects:
Also the psychological impact. Not only for the patient, but also for his family. Depression, anxiety, fear, depression or low self-esteem.
How many types of Butterfly Skin are there?
There are four types and, within them, more than thirty.
- Simple EB. Ulcers occur in the outermost layer of the skin, called the epidermis.
- EB Agreement. Skin lesions appear in the lower, outer and inner layers of the skin (dermis). It is very small.
- Dystrophic EB. Blisters or sores form inside the skin, the dermis.
- EB the founder. They appear in different groups at the same time, even in the mucous membrane (the layer covering the eyes, in the throat…).
Does it have medicine?
Butterfly Skin there is no medicine. The only treatment available is palliative: treating the blisters and sores and treating the itch or infection. Daily treatment, bandages and pain management.
In the case of patients with more severe forms of Epidermolysis bullosa, they need the same care as those affected by heat.
How do they get it?
The greatest suspicion is due to physical symptoms. A small piece of skin is taken for examination under a microscope.
This clinical procedure will show whether the symptoms are caused by EB and what type of Butterfly Skin. The diagnosis is confirmed, however, by genetic testing.
