Treatment of Epidermolysis Bullosa
The treatment of epidermolysis bullosa focuses on wound care, pain relief, infection prevention, and support for mobility and nutrition. While epidermolysis bullosa has no cure, early and consistent treatment can reduce complications and improve quality of life.
Wound Care
Daily skin care is essential. Steps include:
Sterile dressings over open wounds to prevent infection
Non-stick bandages to avoid damaging fragile skin
Antiseptic washes to cleanse blisters and reduce bacteria
Moisturisers and barrier creams to soothe dry, irritated skin
Parents and caregivers must be trained to manage wounds at home. Supplies such as silicone dressings, foam padding, and adhesive-free tapes are preferred, though they are often expensive or hard to source in South Africa.
Pain Management
Children and adults with EB often live in constant discomfort. Pain relief may include:
Paracetamol or ibuprofen
Oral opioids for severe pain
Topical anaesthetics during dressing changes
Anti-itch medications like antihistamines
Psychological support and relaxation techniques are also important for coping with daily pain.
Nutritional Support
Feeding difficulties due to mouth or oesophageal blisters can lead to poor weight gain or anaemia. Dietitians may recommend:
High-calorie, soft foods
Vitamin and iron supplements
Feeding tubes in severe cases to support growth
Infection Control
Wounds can easily become infected. Caregivers should watch for:
Increased redness, swelling, or discharge
Fever or signs of sepsis
Strong odour from wounds
Prompt treatment with antibiotics is crucial to prevent complications.
Physiotherapy and Occupational Therapy
To maintain mobility and prevent contractures, children with EB often need:
Gentle stretching and movement exercises
Custom shoes or splints
Mobility aids like wheelchairs or walkers as needed
Emotional and Family Support | Treatment of Epidermolysis Bullosa
Living with EB can be emotionally draining. Counselling, support groups, and community outreach help reduce isolation. Parents may need support to manage burnout, grief, or anxiety.
In South Africa, some NGOs and charities assist with wound care supplies and education. However, much of the burden still falls on families, especially in rural or low-income settings.
The treatment of epidermolysis bullosa is lifelong. Multidisciplinary care from doctors, nurses, nutritionists, and therapists provides the best outcomes.
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