Table 5.

Recommended Surveillance for Individuals with DEB

System/ConcernEvaluationFrequency
Blood
  • CBC & differential
  • Iron
  • Total iron-binding capacity
  • Ferritin
  • Soluble transferrin receptor
Every 6-12 mos to evaluate for anemia
Kidney
  • Renal panel
  • Urinalysis
Every 6-12 mos to evaluate renal function & for cystitis
Liver Liver function testsEvery 6-12 mos to evaluate for liver function 1
Skin ZincEvery 6-12 mos for wound healing
Bones 25-OH vitamin D3Every 6-12 mos due to risk of osteoporosis
Bone density scanAnnually for osteoporosis
Heart Selenium & carnitineEvery 6-12 mos due to risk for cardiomyopathy w/low levels
EchocardiogramAnnually to monitor for cardiomyopathy
Immune system
  • C-reactive protein
  • Erythrocyte sedimentation rate
Every 6-12 mos to evaluate for inflammation
1.

Rarely, individuals with RDEB can develop fulminant and even fatal hepatic failure. Some of the medications used in severe RDEB for pain, itch, and/or infection may have adverse effects on liver function.

From: Dystrophic Epidermolysis Bullosa

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