Based on our discussions with people living with EB, we have put together a list of frequently asked questions below. We will continue to add to this page as needed. If you feel we have missed off an important question or have any other suggestions, please email [email protected].

If you need support, contact our DEBRA EB Community Support Team on 01344 771961 and select Option 1.


Working whilst living with EB

What are some relevant employment terms/definitions?

Disability discrimination – being treated in a different way because you are disabled.

Equality Act – an active law from 2010 to achieve fairness and equality for everyone (as defined by the Act). It supersedes the Disability Discrimination Act.

Human Resources (HR) – the department within a company or organisation who are responsible for people and what they need. 

Reasonable adjustments – changes made to make it easier for people living with a disability or health condition to access education and work.

Do I need to tell my employer that I have EB?

If you are working in the UK, you are not required to tell your employer if you have a disability or if you are living with a health condition. Disclosing personal health information should always be a choice that you have made.

If your condition doesn’t have an impact on your work or compromise health and safety, then you may choose not to disclose this. However, it might be helpful, especially if you think you may require additional support or adaptations to carry out the role.

You can ask your HR department or line manager to keep this confidential.

Visit our talking to your employer page for more information.

What are some examples of reasonable adjustments for people living with EB?

Some of our Members living with EB have found that even minor reasonable adjustments have greatly improved their working conditions:

  • Uniform - having a cotton version of any uniform, if available, or close alternative option (instead of other fabrics, such as polyester) and permission to wear alternative footwear. People living with EB may require more regular washing and having additional uniforms may be helpful.
  • Workspace - having a fan near where you are working, as well as sitting for a task or using a high stool/perching chair instead of standing. Expert advice on seating choice if in an office role, including using a cushion, can be sought.
  • Walking - there might be alternative duties that minimise the amount of walking required.
  • Technology - specific computer accessories or software.
  • Flexible hours and working - staggering start/end times to avoid rush hour on public transport and allowing you to work from home, where possible.
  • Breaks - permission to take breaks when needed if in pain.

Reasonable adjustments do not have to be costly and sometimes simple measures can make a real difference.

Can my employer make me wear a uniform, even if it makes my EB worse?

Employers may have a dress code or uniform requirement, sometimes for health and safety reasons. The dress code must not be discriminatory, and employers must make reasonable adjustments as appropriate for their employees. It might help to arrange a meeting with your employer to explain how your EB has an impact on you and explain what would help you (e.g. being able to wear soft trainers of your choice).

Visit the ACAS website for more information on dress codes and appearance at work.

Taking time off

Can I have time off work to see my EB nurse or attend hospital appointments?

Your employer does not have to pay you for time off if you have a dental or medical appointment, unless this is in your contract of employment. They can ask you to arrange medical appointments outside of working hours. However, if your employer refuses time off for you to see a healthcare professional related to a disability, this may be discrimination.

It is important that you keep your EB appointments and you should discuss with your employer when these may take place and how much time off you need.

Can I have extra time off during the day to change my dressings?

Your employer should not discriminate against you due to your EB and should make reasonable adjustments so that you are not at a disadvantage. Extra rest breaks or breaks to have prescribed treatment (e.g. changing dressings or taking pain relief) may be considered a reasonable adjustment by your employer.


Job searching and planning for work

What steps should I take if I have never had a job?

Job searching, especially for the first time, may be daunting. Your local Jobcentre Plus can help you find a job or learn new skills and apply for a job. You may be eligible for 1:1 support where a work coach can help you to identify your skills and apply for jobs.

You might want to think about taking on a work experience placement to help you build your confidence and learn new skills. Look for volunteer roles in your local area. If you have a DEBRA shop near you, they may be able to offer you some work experience as a volunteer.

Even though you may never have worked before, don’t let this put you off if you feel that you are ready to start a new job. You will have personal attributes and skills that employers value.

What is a ‘disability confident’ employer?

If there is a ‘disability confident’ symbol on a job advert or application, this means that the employer is committed to employing disabled people and you will be guaranteed an interview if you meet the basic conditions for the job.

Visit the government website on looking for work if you’re disabled for more information.


Benefits and employment

Will my job affect my disability benefits?

Disability Living Allowance (DLA) and Personal Independence Payment (PIP) are not means tested and can continue to be paid regardless of your earnings. If you have been awarded other benefits (e.g. Employment and Support Allowance (ESA)), you must inform the Department for Work & Pensions (DWP) or HM Revenue and Customs (HMRC) of any change in circumstances.

Please contact the DEBRA EB Community Support Team on 01344 771961 (select Option 1) if you need support working with any other agencies.


Discrimination in the workplace

Will I be subject to disciplinary procedures if I am absent from work due to my EB?

The Equality Act 2010 makes it unlawful for an employee to be discriminated against due to their disability. You should not be treated less favourably as a consequence of your disability.

There are different laws applicable to people living in Northern Ireland; visit the website for more information.

Visit the SCOPE website for more information, such as the benefits of disclosing your disability to give you additional rights when it comes to sick leave.

What do I do if I think I have been treated unfairly at work because of my EB?

All employees have rights at work, and you have additional rights as a worker with disabilities under the Equality Act 2010. The Equality Act 2010 protects you from workplace discrimination for any mental or physical impairment that affects your ability to perform normal daily activities.

Even though EB varies in type and level of severity, people living with EB often require alternative solutions, particularly after repeated movements (e.g. typing on a keyboard, walking a shop floor).

There are different laws applicable to people living in Northern Ireland; visit the website for more information.

Legally, no one can be discriminated against because of their EB.