# Nutrition in epidermolysis bullosa
Good nutrition is important in epidermolysis bullosa (EB) because the condition can affect the skin, mouth and digestive system, and because the body needs extra energy and building blocks for wound healing. This page describes what is known about nutrition and EB.
Increased nutritional needs
People with EB often need more calories and proteins than average. This is because the body must continuously repair damaged skin.
ProveniIncluded in official guidelines, or approved by EMA or FDA
Especially in severe forms (such as recessive dystrophic EB), energy expenditure can be significantly higher.
Regular measurement of growth, weight and height helps determine whether someone is getting enough. Children with EB can fall behind in growth. In adults, underweight can develop due to pain when eating or difficulty swallowing.
Mouth, teeth and esophagus
The mouth and esophagus can be more severely damaged in EB. This makes eating difficult and painful.
ProveniIncluded in official guidelines, or approved by EMA or FDA
Some patients develop narrowing (strictures) in the esophagus, making certain foods harder to pass through. This can occur at any time.
Soft, finely ground or liquid food is easier for many patients to consume. Choosing foods that are not sharp, hard or very hot can reduce pain. Personal dietary choices, especially after esophageal problems, are best discussed with a dietitian and treating physician.
Zinc status
Recent research shows that many patients with recessive dystrophic EB have low zinc levels.
ResearchediPositive results in clinical studies, not yet standard treatment
Zinc plays a role in wound healing and immune function. It is still unclear whether adjusting zinc through diet or supplementation always helps, and how best to monitor it. This requires personal guidance from your healthcare provider or dietitian.
Inflammation and antioxidants
Research shows that patients with EB have many inflammation markers in their blood.
ResearchediPositive results in clinical studies, not yet standard treatment
Whether foods richer in antioxidants (such as vegetables and fruit) can reduce these inflammations is not yet clearly established. For now: healthy food with plenty of vegetables and fruit is generally beneficial, but it is not proven that this specifically counteracts EB-related inflammation.
Growth disorders
Children with EB sometimes grow more slowly than expected, even if they eat enough.
ResearchediPositive results in clinical studies, not yet standard treatment
This is associated with chronic inflammation and, among other things, possibly abnormalities in growth factors. Nutrition alone cannot always remedy this. The doctor will regularly check length and weight.
Nutrition and cancer risk
Patients with dystrophic EB have an increased risk of skin cancer.
ProveniIncluded in official guidelines, or approved by EMA or FDA
Good nutritional status helps keep the immune system strong, but nutrition is not a replacement for protective measures against the sun. Specific nutrients against cancer in EB have not been demonstrated; healthy nutrition remains the basis.
Practical considerations
- **Chewing movements:** Some have difficulty with chewing movements due to blistering in the mouth or jaw. Finely ground or liquid food may then be necessary.
- **Undernutrition risk:** Watch for weight loss, fatigue or slow wound healing. These can be signs of insufficient nutrition and deserve attention from your doctor.
- **Drug interactions:** Certain foods can affect the absorption of medicines. Discuss this with your pharmacy and dietitian.
Supplementation and herbs
There is no solid evidence that specific nutritional supplements (vitamin complexes, herbal medicines or special preparations) prevent or cure EB-related problems.
UnproveniNo scientific evidence that it works
For zinc, vitamin D, iron or other minerals: use only on the advice of your healthcare provider, as too much can also be harmful.
Role of the dietician
A dietitian specializing in chronic diseases can help you with:
- Adapted food that is easy to consume
- Ensuring you get enough calories and proteins
- Examining whether certain foods cause problems
- Overcoming swallowing difficulties
This is personalized care and cannot be resolved through general guidelines.
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_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._