Hidden disabilities: Guidance for EB patients
For some people EB can be a non-visible disability that others don’t see or understand. In this section, find out how you can make other people more aware of your EB and get the support you need.
On this page you’ll learn about:
- Situations when EB can present as a non-visible disability
- Choosing whether to disclose to others that you have EB
- Hidden Disabilities Sunflower ID card and lanyard
- DEBRA’s ‘I have EB’ cards
- DEBRA’s medical information card
- How to be a good ally for someone with a visible or non-visible disability
- Useful links
Situations when EB can present as a non-visible disability
EB can be a dynamic disability which means the effects of the condition on the person can be changeable. For example, one person with EB may never need any mobility support and instead will make the necessary adjustments to help manage or prevent their symptoms, another person with EB may have a need for a mobility aid on occasion, and for another they may have a frequent need for mobility support.
DEBRA UK members have told us that their EB can feel like a non-visible disability in the following situations:
- when ordering food in a restaurant and they need to ask for certain food types to be softened
- when they are unable to concentrate, whether that is at school, college, university, or at work, due to the pain they are experiencing
- when they are asked to stand up when they are sat in disabled priority seating on public transport
- when they are questioned as to why they are in a disabled parking space but appear to be able bodied
- when people see them sometimes using a wheelchair, and at other times walking and question their need for a wheelchair
- when they are walking more slowly that others due to the pain in their feet/blisters
- when they are questioned at work by colleagues about the need for special adjustments including needing to sit near a window to help keep cool and needing more breaks due to fatigue
EB, in all its forms, can be hard to live with both physically and mentally without having to be questioned or being made to feel like you must explain what it is. This is why it is important that more people know about and understand EB.
You can help us make more people aware of EB. For more information about how you can get involved, please visit our involvement page.
Choosing whether to disclose to others that you have EB
If your EB is a non-visible disability, it is entirely your choice as to whether you choose to tell other people that you have the condition, whether that’s people at school, people at work, or anyone else.
You can of course choose to keep it private as you may feel that you don’t have a disability as your EB does not affect your day-to-day life. You also may not want to tell other people as you don’t want them to ‘label’ you. These are very valid reasons to not disclose your EB.
However, depending on your personal situation, it may be helpful to let other people know that you have EB so that they better understand the condition and can help ensure you get any additional support that you may need.
Hidden Disabilities Sunflower ID card and lanyard
You could make other people aware of your EB by wearing a visual indicator.
DEBRA UK is a member of the Hidden Disabilities Sunflower scheme and through us you can request a free DEBRA x Hidden Disabilities Sunflower ID card and lanyard. It has the dual purpose of indicating that you have a hidden disability and EB with a link to our website for more information about EB.
Wearing something that indicates that you have a non-visible disability can be useful when travelling, or at crowded events so that other people can give you a helping hand by:
- Giving up their seat for you.
- Giving you more time.
- Being a bit more patient.
- Making any other necessary adjustments to accommodate your needs.
DEBRA’s ‘I have EB’ cards
You may also find it helpful to have a quantity of our ‘I have EB’ cards, which you can share with people who you feel should know about your EB so that they can find out more about the condition.
We have versions for different EB types, as well as a general ‘I have EB’ card.
You can download them below and save a copy on your phone.
If you would like printed versions of the card, please get in touch with our Membership team.
DEBRA’s medical information card
Because EB is such a rare condition, there is no guarantee that the clinician or GP treating you will have heard of it or understand it. They may require additional specialist EB information and advice, and they may want to contact an on-call dermatologist or a member of your specialist EB healthcare team.
To ensure that they have the right information and contact details we recommend that you always mention that you have EB when speaking to a healthcare professional, even if the reason you are seeing them isn’t directly related to your EB. This will help ensure that they and their teams make the necessary allowances, e.g., avoiding sticky plasters, avoiding sliding when transferring you, using caution when removing any clothing etc.
We’ve created a medical information card so you can easily share important information about EB, as well as the details of your EB healthcare team. We have a different version for each of the specialist EB centres, as well as a general one that you can fill in the details of yourself if you prefer.
Print or save your medical information card on your phone for emergencies
You can request a luggage tag version of the card by contacting our Membership team.
How to be a good ally for someone with a visible or non-visible disability
The charity Scope asked disabled people what non-disabled people could do to be a good ally for them. You might find it helpful to share these top tips to help ensure you that you and other people with both visible and non-visible disabilities get the necessary understanding and support from others.
You may also find the following article interesting and useful to help get the necessary understanding and allowances you need in the workplace. It includes tips for leaders to help support someone in the workplace with a non-visible disability.
Useful links
- Information about how people living with non-visible disabilities can access Blue badges.
- Information on the Equalities Act 2010 which protects and promotes the rights of people living with non-visible disabilities.
- Information about the reasonable adjustments you are entitled to in the workplace.
Page published: October 2024
Last review date: November 2025
Next review date: March 2026