In EB there may be many different reasons for the occurrence of acute and or chronic pain.
You should know ahead of your assessment which form of EB the patient has: In our experience, you may experience pain, it is common in EB, but it is not the mandatory rule! With the devolpment of pain it is necessary to look closely at each individual case and what are the reasons for the pain as they may vary in each type of EB. In the best of circumstances you can find ways to reduce or eliminate pain. It all depends on the form of EB and reasons for the discomfort.
Important points in a nutshell
- Causes for pain in EB:
- The condition itself (blisters, wounds, difficulty swallowing...)
- The treatments (lancing blisters, dressing changes...)
- Medical interventions (drawing blood, injections, surgery...)
- Additional reasons for pain (headaches, stomach aches...)
- You should always treat the underlying cause of the pain first.
- All dressing changes should be performed as pain free as possible.
- When dressing changes have the potential to cause pain, evaluate the need for medication or alternative therapies for treatment including psychological measures. Remember, it is often more effective to combine different therapies.
- Pain management for EBS generalized intermediate, EBS generalized severe and EBS (rare) otherspdf - 182 KB
- Pain management for EBS localizedpdf - 158 KB
- Pain management for dominant dystrophic EBpdf - 159 KB
- Pain management for recessive dystrophic EBpdf - 161 KB
- Pain managementmfor JEB generalized intermediate and JEB (rare) otherspdf - 183 KB
- Pain management for JEB generalized severepdf - 183 KB