Body image and EB: Tips for confidence and self-care
From hosting focus groups with DEBRA members who are living with epidermolysis bullosa (EB), we found some common themes that they think about when it comes appearance. These included:
- Tattoos
- Piercings
- Make-up and skincare
- Confidence
- Appearance at work
- How EB changes throughout life
- How appearance affects relationships
DEBRA members have a lot of insight, experience and information to share, including what products work well for them and their EB. Living with EB is different for each person, and what works for one, does not always work for another. This is why it’s best you consult with your EB healthcare team if you need any further advice or information.
If you aren’t already under the care of one of the specialist EB centres, you can read our guidance on accessing specialist healthcare.
Tips from members
Here are some tips from our members that you may find helpful:
- Coconut oil on scalp to soothe skin.
- Childs Farm moisturiser for legs.
- Skinnies WEB tops to help hold dressings on skin as a protective layer under clothing.
In terms of body modifications like tattoos and piercings, you might find it helpful to discuss this with your EB healthcare team. However, most people with EB have no problems having tattoos or piercings.
Guy’s & St Thomas’ have a great information leaflet about tattoos (with credit to Chris Bloor, EB Clinical Nurse Specialist and Annette Downe, EB Clinical Nurse Specialist). They will be able to share this with you if you request a copy by contacting them.
If you have any questions or want to share your thoughts about the above topics, please contact your local EB Community Support Manager.
Extra resources
We also have information on other areas of support that could help with the common themes and settings where our members have found they think about appearance. Our EB Community Support Team is here to offer practical and emotional support as well as advocacy for your needs however we can, and our website has more support resources on the following:
You may also find some of the Clinical Practice Guidelines (CPGs) useful, such as the supporting sexuality in EB CPG.
Emotional wellbeing
You may find our support resources on emotional wellbeing helpful. We have tips to share, information on how to access mental health resources and counselling services, and information about other organisations that could offer additional support. This includes charities like Changing Faces, who provide support and promote respect for everyone with a visible difference.
We also know how important it is for members of the EB community to connect with each other, and share experiences and tips with others in a similar position. This is why we have our programme of in-person and online events, so you can connect with other members.
Apart from our events, you can also take part in all sorts of member involvement opportunities, like getting involved with research or volunteering.
Visible Difference Support Hub
The Visible Difference Support Hub offers easy access to free, evidence-based support for people whose lives are impacted by a visible difference of any sort.
It also includes tools for raising awareness and understanding about visible difference.
You’ll find a range of resources on The Visible Difference Support Hub, including podcasts, e-books, an app, a board game, videos, websites and downloadable booklets.
Do you have any tips to share?
If you have any advice from your own experiences that you think other members could find useful, we’d love to hear from you. This could be anything at all – from a product you use, to something that’s helped your emotional wellbeing. Please get in touch with us at feedback@debra.org.uk.
Page published: October 2024
Last review date: April 2025
Next review date: April 2026