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Butterfly children: how to help the sick with severe skin ailment?

A child is an innocent being who deserves only attention, love and hope for a happy life. And how unfair it is that children are born with severe congenital diseases that make their lives a real hell, and every day they struggle for survival. At the same time, adults surrounding the crumb will suffer. One such terrible disease is epidermolysis bullosa.
What is epidermolysis bullosa?
This disease most often occurs from birth and has a characteristic symptom: blisters and wounds on the skin and mucous membranes of the child, arising from the most minor mechanical effects on them. The skin of the child is so vulnerable that it is compared with the butterfly wing, and such patients are called “butterfly children.” DEBRA, an association of patients with this ailment, which operates in many countries of the world, uses a butterfly with its logo.
Epidermolysis bullosa is a non-communicable disease, it is genetic in nature. Therefore, it is impossible to become infected with this disease, it can only be obtained from birth. The reason for everything is a defective gene that is passed from parents to children at the time of their conception.
Signs of epidermolysis bullosa
Depending on the severity of the disease, the symptoms are as follows:
fast and too frequent injury of the skin;
intermittent blistering and erosion of the skin;
lack of nails;
scars and swelling on the skin of the palms, feet;
skin pigmentation;
significant hair loss, up to baldness;
reduced or increased sweating;
the appearance of blisters in the mouth and mucous membranes;
caries, enamel defect;
splicing fingers;
slow growth of the child and poor weight gain.
The traumability of the skin in the simple form of epidermolysis bullosa is not as significant as in the borderline and dystrophic form of the disease.
It is possible to identify the disease in the prenatal and postnatal period of the child’s life, that is, in the womb and after his birth.
How to treat butterfly children?
The treatment of such patients is very long, difficult and expensive. Usually, doctors use protein therapy – they inject normal protein in the necessary amounts into the body, gene therapy – they inject a gene that encodes a damaged protein. Cell therapy, treatment using bone marrow stem cells, combination therapy can also be used. All these procedures are quite complex and costly for patients, so they are not accessible to all patients.
The fight against epidermolysis bullosa also includes symptomatic therapy. These are analgesics, anti-inflammatory drugs, antibiotics, which help facilitate the life of the sick and fight against possible complications at the wound site. Unfortunately, epidermolysis bullosa is an incurable disease.
Butterfly children want to live as simple, clear and carefree lives as their peers. But they are deprived of the simple joys of life, constantly overcoming terrible pain. For them, every day is a new test and suffering. Such diseases make you wonder how unfair the world is. Without the support of the state and public organizations, it is almost impossible for such children and their parents to deal effectively with the disease, and all they have to do is wait for their end in agony. Society must open its eyes to children with similar rare diseases and do everything possible to help them, both moral and material.

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