The Butterfly Children
9 in every one million people in the world are said to suffer from Epidermolysis Bullosa in one of its manifestations. It is a genetic skin condition with effects that range from mild to severe.
It’s characterized by the appearance of blisters in the skin as a result of minor friction that would not affect healthy skin at all. This is why people, mainly infants, that suffer from this disease are called “Butterfly Children”, since their skin is as frail as the wings of a butterfly.
Because it’s a genetic disorder, it can only manifest itself if you are born with it. The disorder can only really be passed on if one of the parents has the dormant gene, since people that have the disease will find it extremely difficult to copulate due to the disease itself. Skin lesions would quickly make the sexual act tremendously painful and nearly impossible to fulfill.
Other symptoms of this disease include loss of hair, respiratory difficulties, chronic blistering around the eyes, nose and mouth, because they are areas of constant friction and contact, as well as blistering of the throat, which leads to difficulty in feeding, especially with small children who don’t understand why they hurt and what they should do to make it better. More symptoms include teeth decay and gum problems, loss or deformation of the nails and a condition called milia, which consists of pockets of dead tissue between the layers of the skin that require minor surgery to extract.
The best thing to come out of this disease is the human warmth around people that suffer from it. Almost every documented case of a person who suffers from Epidermolysis Bullosa and manages to reach adult life then decides to freely contribute and devote his or her time to studying and seeking a cure for the disease. It’s really one of those cases that you can’t imagine daily life struggling with this condition. We touch our own skin so often and so carelessly, scratching it, poking at it and rubbing it with no conscience that there are people out there who cannot do this without risking a major outbreak of painful blisters and skin lesions. As of now there is no cure for this disease, and diagnosing it is still a hard procedure. Even attempts to stop the disease from evolving at an early stage of the patient’s life have so far failed, since it’s something that’s already fully active in the child in the womb, as evidenced by lesions in the baby that are already present at childbirth.
