Table 9.

Recommended Surveillance for Individuals with Epidermolysis Bullosa Simplex

System/ConcernEvaluationFrequency
Skin
  • Dermatologic assessment for blisters, oral disease, hyperkeratosis, hyperhidrosis, signs/symptoms of wound infection, pain, & itching
  • Assess hydration status.
At each visit
Growth, weight,
& nutrition 		Assess growth & nutritional status, incl poor or excess weight gain, feeding issues, & signs/symptoms of anemia & dietary deficiencies.
Motor
development
& mobility 		Assess effect of skin disease on motor skills & functional mobility, incl walking.
Psychosocial
well-being 		Assess psychosocial well-being & quality of life.
Cardiac In persons w/EBS, intermediate w/cardiomyopathy: consider serum BNP & creatinine kinase due to ↑ risk for early-onset dilated cardiomyopathy. 1As needed &/or as recommended by cardiologist
Other
  • Neurologic assessment for those w/muscular dystrophy
  • Nephrology assessment for those w/nephropathy
As needed &/or as recommended by relevant specialist

From: Epidermolysis Bullosa Simplex

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