We know that living with EB can be really difficult. The Debra insight study showed:
- EB affects self-confidence in over two thirds of people with EB
- EB impacts mental health in over half of people with EB
Many also said that they felt like “a burden” to others and reported experiencing bullying and/or abuse.
So, EB can affect how you feel about yourself and how you are feeling in relation to others.
It is normal to have strong feelings in response to the demands of EB in your lives. There are likely to be times when it feels too much and overwhelming, whereas other times it may feel less prominent or less like a focus in your life.
There are a number of support pathways are available when EB feels more troublesome.
- Self-help guides
- Journaling
- Guided relaxation
- Guided mindfulness
- Sleep support
Links to assist in these areas can be found at the bottom of the page.
In-person support
The experienced EB nurses can provide information and a listening ear regarding your mental wellbeing and the emotional impact of living with EB.
The EB team can help you to think through a suitable approach including:
- access to groups to increase social contact
- a referral to Debra for EB-specific practical support
- a referral to social prescribing
- practical suggestions to help solve issues that are contributing to difficulties
- self-help books or digital resources
- access to local psychological support for anxiety or depression
- a referral to the EB psychology team
Last reviewed: 29 September 2025