The rare disease of Butterfly Children is known for the fragility of the patient's skin. It is called Epidermolysis Bullosa (EB), a group of hereditary diseases with a range of mild to severe manifestations that affect the skin, and even the mucosal membranes in some of its subtypes.
The main characteristics of Butterfly Children is the formation of blisters and sores on the skin after the slightest friction, and may even affect other organs. Sometimes patients may have trouble eating, as the illness affects internal mucous membranes: the gastrointestinal system, lungs, muscles or bladder.
As already mentioned, it is a hereditary and not contagious genetic disorder that is chronic, incurable, and constantly evolves. Its evolution depends on each case and on its manifestation, but we must bear in mind that simply walking, or giving a hug, may cause lesions to the skin.
This disease is detected at birth and is not possible to detect earlier. In more severe cases, these children have had to learn to cope with long, painful medical treatments followed by bandaging; an increasing dependence due to the gradual loss of functioning of the hands and feet, resulting in disability; and other problems, such as malnutrition, anemia, infections and even skin cancer.
Tips for traveling in a car with Butterfly Children
Given the nature of this disease and its variable symptoms, the recommendations we offer to improve these children's comfort and security when riding in a car may be categorized as general recommendations for well-being for the child's daily activities, grouped into four main categories:
- Wear soft clothes to avoid friction and the appearance of blisters.
- Control body temperature: avoid exposure to excessive heat.
- Wear soft mittens or gloves at night to avoid friction and sores.
- Use foam fillers on surfaces that may be rubbed against, such as chairs in the home, beds, car seats and, of course, child restraint systems.
Particularly for the child restraint systems, keep in mind that their effectiveness is dependent on their correct adjustment to a child's body. The possibility or impossibility of having a child use a restraint system will very much depend on the severity of the disease, and this will be subject to the opinion of the patient's physician. In any case, it is advisable to use fillers to avoid, as much as possible, discomfort caused to the child by the harnesses and the seat itself.