Butterfly children

Children-Butterflies ... For the first time hearing this phrase, many immediately imagine colorful moths, carelessly fluttering between flowers and the joy of childhood, deprived of bitter disappointments and anxieties. Meanwhile, the life of children with the butterfly syndrome is not at all like a fairy tale or an ideal picture. In this article we will talk about congenital bullous epidermolysis - a rare genetic disease that affects the skin of the human body.

Bullous Epidermolysis: Causes

As a rule, parents of butterfly children learn about the illness of their child's skin in the first days (and even hours) after the birth of the baby. For the first time this disease was described as early as the end of the 19th century, in 1886.

The cause of the disease is a genetic defect that deprives the epidermal layer of the ability to perform a protective function. This defect is either transmitted from the parents who are its hidden carriers, or arises spontaneously. As a result, all skin (including mucous membranes) becomes extremely fragile - the slightest touch can cause damage. Otherwise, such children are perfectly normal - they do not lag behind in emotional and intellectual development, they grow normally and with the help they can become a full-fledged part of the society.

Patterns of inheritance of the disease have not yet been identified - patients with bullous epidermolysis can have both healthy and sick children. the peculiarity of the disease is also that before the birth of a child it is impossible to diagnose it by any of the known medical methods - neither the ultrasound of the fetus nor the laboratory tests yield results.

The critical period of life for butterfly children is up to three years. In the future, with proper treatment and care, the skin becomes a little rougher, becomes more stable, although it does not reach the strength of the skin of the average person. In addition, small children can not be aware of the cause-effect relationships, they can not explain that it is impossible, for example, to crawl on their knees, since the skin of the legs after that completely "peel off", or rub eyes or cheeks.

Bullous epidermolysis: treatment

The fate of butterfly children is difficult, because the illness that causes them so much suffering is incurable today. All that can be done for such babies is to try to protect their fragile skin from injuries (which is very difficult), and in case of their occurrence it is right and timely to look after them. But despite this, in many civilized countries schemes of care for patients and courses of lifelong therapy have been developed, which allow them to lead a normal life, to receive education, to lead an active social life and even play sports.

In the CIS, with the diagnosis of bullous epidermolysis, the prognosis is most often unfavorable, because the disease is extremely rare, physicians have practically no experience in treating such patients, and in some cases even do not suspect the existence of this disease. Very often parents themselves exacerbate the situation, doing self-medication and trying to treat the damage to the skin of the baby phytotherapeutic means, self-made ointments and talkers, bluehead and other means of this kind. Needless to say, after such a "treatment", the costs of restoring the epidermis of a child increase to cosmic dimensions, while adequate timely care is even more difficult, but much less expensive. Butterfly children need permanent treatment of the skin with special moisturizing and antiseptic preparations, as well as regular dressings. In this case, the usual dressings do not suit them - special, gentle bandages that do not injure the skin are required.

Because of poor medical and social awareness, lack of knowledge on care and treatment, many children with bullous epidermolysis die at an early age.

Of course, skin care and the lifestyle of butterfly children differ significantly depending on the severity of the disease - the heavier the form and the more pronounced the symptoms, the more careful and accurate the care and treatment of the child should be.