What is Epidermolysis bullosa?
EB is a rare genetic hereditary skin disease affecting one in 50,000 people in the world causing the skin to be very fragile and to blister quite easily. Blisters and areas of spreading skin loss (erosions) occur in response to minor injury or friction, such as rubbing or scratching. It causes the lack of collagen number 7 in the skin, which separates the layers of skin from each other with even the slightest touch. Severe cases of this disease involve widespread blistering that can lead to serious infections, dehydration, and other difficult medical problems. Severe cases may be life-threatening particularly in infancy.
In addition, external factors such as weather and/or bad handling affect EB patients by causing ulcers of the hands, the feet and the body and even the digestive system and polys similar to the effects of burns in the second and third degrees.
The EB patient usually avoids mixing with the surrounding world and prefers seclusion. A minor bruise causes scratches and ulcers that often lead to temporary haemorrhage and agonizing pain. The mother, often as the primary caretaker has to provide large quantities of gauze and antibiotic creams particularly during the hot summer months and be able to handle their skin as softly as handling the wings of a butterfly. She also needs patience and perseverance in the face of seeing her child in excrutiating pain.
EB patients suffer from depression and disability thus when dealing them, a nice word with a smile on the face and love, can help them build self-confidence and the ability to live a comfortable life while adjusting to their condition.