The epidermolysis bullosa is (EB) is commonly known as butterfly skin. It is a genetic disorder that causes the formation of blisters and erosions on areas of skin and mucous membranes . Raul De Lucas, a member of the Spanish Academy of Dermatology and Venereology (AEDV) defines it as if “the glue that binds the epidermis to the dermis is damaged and therefore the skin peels off after minimal friction .” Simple manipulation of objects can stimulate the appearance of blisters and even scarring. “Blisters hurt and through them nutrients are lost , which determines a delay in growth , ” adds De Lucas.
- At complications of the disease such problems add psychological and social
Within the epidermolysis bullosa you can distinguish four main types: simple, junctional, dystrophic and Kindler syndrome . Skin responsible Butterfly Association (Debra) TodoDermo have explained that the main types of conditions are further divided into several subtypes, getting to know today to more than 30 different subtypes of the disease . “Complications of butterfly skin are also blisters and sores on the skin, various extracutaneous manifestations, such as the formation of zones of erosion in La Corne to and mucous membranes, hypoplastic lesions of the enamel of the teeth, narrowing respiratory, gastrointestinal and urogenital, pyloric atresia, muscular dystrophy, complications skeletal muscle and skin carcinoma. ” Many of these difficulties impeding the realization of basic activities of daily living . From Debra they warn that these complications add the psychological problems and social, that result in isolation and low self – esteem. Sometimes families also go through economic difficulties because of the high cost of the disease .
Today, the only therapy that alleviates this condition is the local priest with special dressings “involving a second skin, so it should be no adhesives and let the exudate” De Lucas says. These cures are daily and in general, the patient is bandaged to protect against chafing.
Debra explains that for epidermolysis bullosa simple “is using botulinum toxin injected into the foot to reduce sweating in the area and thus avoid blisters caused by friction that occurs between the shoe and the ground”.
- Those affected by the butterfly skin should always use a physical filter with an SPF 50 on exposed areas
For children, protection is crucial for delaying the complications of this disease . Luke warns that “we must preserve mouth opening exercises and mobility of the fingers ” and adds that ” it is very important feeding strict control because the wounds will evolve better.” The expert further explained that e l use of gastrostomy so early in many cases to help ensure adequate nutrition . Debra recommends pay special attention to how to catch the children, because I do it the usual way (under the armpit) can cause major damage, “when it comes to babies, care should be more pronounced since the disease the already delicate skin of any baby , “adds.
For the summer, the skin is more exposed to the sun and seawater or pools. Experts say those affected by the butterfly skin should always use a physical filter with an SPF 50 on exposed areas , although the bandage is usually enough to protect the skin. Debra emphasize that “when a person with butterfly skin is exposed to sunlight, usually does with neoprene type, allowing them to hold garments dressings and bandages to keep moving during bath time.”
Seawater contributes to improving wounds actually ” controls the itching and infection ” such as Luke relates, although advised to avoid irritating factors like “sweat and sand” . According to Debra “one of the recommendations to avoid the pain associated with the bathroom at home is adding salt to the bath, because this form osmotic load between the bath water balances and the affected person, avoiding the osmotic exchange which is related to the pain. “
- Chlorine pool “could contribute to the antiseptic effect of treatments”
On the other hand, the chlorine in the pool “could contribute to the antiseptic effect of treatments , ” according to De Lucas. “If in suitable concentrations, helps chlorine disinfection of wounds”.
Debra TodoDermo explained that people with butterfly skin need a wide variety of products for the treatment of disease, both cosmetic and health . “Within health can highlight a variety of dressings, cleansers, disinfectants, healing …” lists. Among the cosmetic skin care products it emphasizes “the gels without soap and moisturizers with antipruritic properties (which inhibit itching).” Luke also points out that hydration should be a non – greasy cream and bathroom with antiseptics (water and salt or even with diluted bleach). In other affected areas such as teeth, highlight ” pastes and mouthwashes fluoride to prevent cavities and oral mucosa protectors which prevent blisters”.