Individuals with milder forms of Epidermolysis Bullosa may not require extensive treatment but should focus on preventing blister formation and managing blisters to prevent infection. Those with moderate to severe forms may require psychological support in addition to skin and tissue care. Caregivers should not feel overwhelmed, as there are various healthcare professionals and support groups available for assistance.
Preventive Measures:
– Maintain a consistent room temperature to avoid overheating.
– Use lubricants to reduce friction and keep the skin moisturized.
– Dress the individual in soft, minimal-handling clothing.
– Use sheepskin on hard surfaces like car seats.
– Encourage wearing mittens at bedtime to prevent scratching.
Care for Blisters:
– Aim to alleviate pain, prevent fluid loss, promote healing, and prevent infection.
– Soak bandages in warm water to remove them without causing further damage.
– Bathe in stages if a full bath is uncomfortable.
– Follow medical advice on safely draining blisters, typically by maintaining the top skin layer to cover the underlying area.
– Apply antibiotic ointment and cover the blister with a non-sticking bandage.
– Maintain a moderately moist environment for healing, but manage heavy drainage with absorbent dressings or foam.
– Consider contact layer dressings or bandages soaked in petroleum jelly or lubricating substances as recommended by healthcare professionals.