Patients suffering from epidermolysis bullosa have to face with the fact that they are suffering from a chronic skin condition and they have to do their best in order to bring the disease under control and prevent recurrent episodes of skin blistering. Skin blistering is, in fact, the main characteristic of the condition. The presence of skin blisters is associated with all health issues these patients have to deal with along with complications. The most common problem such patients have to cope with are secondary infections, pain, severe scarring and problems with their teeth.
Epidermolysis Bullosa Treatment Plan
The major goal of treatment for epidermolysis bullosa is maintaining control over the symptoms and signs, prevention of skin damage, improving patient's quality of life and reducing the risk of complications.
Piece of Advice
One of the most important things is to prevent skin irritation, friction and never expose the body to excessive heat. This is particularly important for children who simply pay no attention and while playing may experience many skin injuries. This increases the frequency of blistering. It does not mean that the child should not play. On contrary, he/she may play and even participate in certain sports but never engage in any kind of activity which increases the chance of skin damage. Skin rubbing can be also prevented with suitable clothes and when weather is hot the child should be kept as cool as possible. Also, sharp and hard food is to be avoided because it may initiate blistering inside the oral cavity.
What about Skin Care?
Parents are taught how and when to puncture new blisters and how to take care of wounds afterwards. In order to prevent infections some wounds need to be covered. Others may be left to heal on their own in the open air. Doctors also inform parents at what time should the wound dressing be changed and if the skin needs to be covered with some moisturizer or antibiotic cream beforehand.
Symptoms and signs of infection are redness and heat of the skin, pus or watery discharge, crusting on the surface of the wound, improper healing of the wound, fever (100.4°F or above) and chills.Pain Relief
In some cases blistering is severe and associated with excruciating pain, not allowing the child to function normally. Even though pain in mild forms of the disease may be brought under control with over-the-counter pain killers, patients suffering from severe epidermolysis bullosa usually require codeine or other more potent pain killers like morphine. Always remember that the child under the age of 16 must never be administered Aspirin because of the risk of developing Reye's syndrome. Chronic pain is treated with gabapentin and amitriptyline.Dental and Eye Care
Sores inside the oral cavity may make cleaning of the teeth difficult. Still, patients should never neglect oral hygiene and have regular dental check-ups.
Finally, children suffering from JEB as well as those with recessive DEB may have to deal with blistering around the eyes. This complication requires consultation with ophthalmologist and treatment with eye drops and ointments which keep the eyes moist.