Epidermolysis bullosa

Others

• Genetics, incidence, classification and diagnosis of EB
• EB at birth and early childhood
• Living with EB
• EB as a multisystemic disease
• Pain management in EB
  • 1. Types of pain and pain assessment
  • 2. Anticipatory anxiety
  • 3. Pain treatment
  • 4. Special characteristics of pain during childhood
    • 4.1. New-born and infant
    • 4.2. Older children
    • 4.3. Strategies for children
    • 4.4. Strategies for adults
  • 5. Pain in special situations
• Management of itchy skin in EB
• Skin and wound care in EB
• EB research and clinical trials
• Key professionals in the field of epidermolysis at a national and international level
• National and international reference entities
• Informative resources about EB fo patients and professionals
• Results of the study about epidermolysis bullosa (Rare Commons)

4.4. Strategies for adults

• Explain clearly when will the painful procedure be done to be able to anticipate it, always listening to the minor’s necessities and letting them a little time to overcome the initial stress reaction.
• Keeping the room where the cure will be done neat and uncluttered, with the finality of It being a pleasant space for everyone intervening in the cure.
• Try to always start at the same time and keep routines, without delaying the procedure to not let the anxiety advance. Offer distraction strategies for the day before starting.
• Favouring arest and relaxation environment after finishing the cure, offering pleasant closing rituals as much as possible. If the cure is very long, evaluate the possibility of offering breaks during the cure.
• Favouring laughter and humour during the cure.
• Giving encouragement and supporting messages. For example: “We can do this together!”, “We will do it exactly as we practiced before”, “You are as strong and brave as …”.
• Offer emotional support during the cures to the minor: skinship, verbal calmness, helping oneself from the "heroes and heroines", etc.
• Offer rewards for the efforts, but trying to prioritize non-materialistic ones: compliments, kisses and hugs, some pleasant and unusual activity, etc.
• Teamwork with the other caregiver.
• Looking for strategies to manage your own stress during the cure. For example, changing negative thoughts for positive ones: changing “We have a new wound again!” for “They have a wound after a fun activity!”.
• Keeping individual self-care breaks if possible, looking for support from other people and sharing responsibilities.
• Practicing relaxation exercises, mindfulness and breathing.

Last modified

26 March 2025