Living with EB stories and tips

This page is a resource where people living with EB can share their top tips, stories of experience and anything else that could be relevant for other members. We hope to update this page often, so please email [email protected] to get involved.

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

Q&A with Members: Living with EB and going through education

We asked Members to tell their experiences of what life has been like living with EB and going through school – from primary through to university. The below Q&As give some perspectives and advice from some of our DEBRA UK Members.

What top tips do you have for others living with EB?

Have a good support network. It’s important to have a couple of friends that you can trust and tell them everything about EB and the way it affects you – it can really help bring you up when you’re feeling down. They will be understanding when you have to cancel plans because of being in pain or when you have to take regular breaks when walking. When EB makes you feel low, it’s good to have people you can talk to about it. Surrounding yourself with good and positive friends really helps you to see the light in these kind of upsetting situations [infections and blisters preventing from walking]; that it will get better again.

Invest in some good comfy shoes. That is one thing that has helped me massively. It allows me to walk that little bit extra without feeling pain and there’s so many different brands other than memory foam shoes. This would definitely help when it comes to walking to and from lessons and just in general.

– DEBRA Member (England)

I have RDEB, which as we know, can make your teenage years interesting to say the least. Always remember, first and foremost, that we are so much more than our bodies and they do not define us. Even on bad days, we are not defined by our bodies. In school especially, we are having to learn much more than the average person is. Don't be afraid to advocate for yourself and ask for help! Most people would be more than willing to provide assistance, whatever that may be. If doing this in person is a source of anxiety, emailing may be easier. 

– DEBRA Member (Scotland)

What did you do when you faced a challenge?

From an early age (primary school) I always felt excluded and ‘different’ because of my EB. I would have to be extra careful and take extra precautions when doing activities that other people who don’t have EB could – even the slightest thing (like trying to not knock your hand on the side of the table or doing sporty activities, like musical chairs) would be worrying to participate in. But, by making teachers aware of the condition and the struggles we face, they can be more understanding and supportive in these situations and warn fellow students to be extra careful around you.

In secondary school I would struggle a lot with PE. I would feel uncomfortable changing with everyone else, so I would go to the toilet to change. People did ask why, and I just said that I wanted some privacy. Also, going to and from classes would be a struggle due to the rush when everyone finished lessons. The school gave me a medical card, which allowed me to leave lessons a couple minutes early so I could take my time going to the next lesson and avoid getting my feet hurt. When I did have blisters on my feet it allowed me to take my time to get to the next lesson.

Some days my feet would get really bad, which meant I couldn’t go to school. In these situations, I would just take painkillers and take it easy, do something to take your mind off of it, and do what you can in terms of schoolwork. But, if I could go back now, I would ask for more support from the school with my EB – extra support when I fell behind and for work to catch up on at home.

DEBRA helped with getting me extra time and rest breaks for my exams. This really helped me because holding a pen for long causes friction on my fingers and causes blisters, so this meant that I could relax my hands when I felt like I needed it and take my time with the exam. You could also ask for a scribe or type up the exam if that suits you which could really help.

– DEBRA Member (England)

Everyone has bad days, and for us, that can affect our academic output. This is okay! If you feel you need to stay at home, do. You and your health are much more important than classwork. If you don't feel up to tackling your coursework on a bad day, do not be hard on yourself. We need time to recover before we can be expected to do such work. Do whatever you need to do to relax or feel better, the work will be waiting for you when you're ready. I am always reluctant to ask for extensions with my essays, etc, and I have found that I should not be. Again, it's okay to ask for help – it does not mean the quality of your work is less than or will suffer. Lastly, on bad days, DON'T FEEL GUILTY FOR NEEDING TO REST! We have to do so, so much more than our peers do before we even leave the house to go to class. Be proud of yourself for the work you have done and continue to prove society wrong!

– DEBRA Member (Scotland)

How did/do you manage to catch up on work when you missed days/lectures?

During college, I was absent for a lot of it due to my skin flaring up really badly, but I would do the work at home when I could and try to catch up. But, I think at some points I really over stressed myself because I thought I would fail due to being absent; I actually did really well. I think it’s important to understand that it’s okay if you can’t get everything done and completed. We do have it harder than others and it’s okay, we can always catch up when we’re feeling better. I think a good relationship with your teachers is also key so you can ask for help and support when needed, which is something I benefitted from. Asking for help after college or during lunch time really helped me to catch up with anything I missed out on. Again, with college, DEBRA helped me to get extra time and rest breaks for exams, which aided my ability to perform well in them – it allowed me to take breaks when needed and write slower to avoid blisters.

University has a lot to offer in terms of support. My uni offered to get me a comfortable chair in lectures so it helps with the issues I had with my back. They also have various ways of helping you during your exams – they can provide you with a foot rest; a small room with a couple other students if you feel anxious going into a big hall with other people; if you’re feeling unwell on the exam day they can move your exam to the summer so you have a fair chance at attempting it. They can reserve the books in the library and also put them online. This saves you going to the floor and looking for it yourself, which is the last thing you want to do when you’re struggling.

DEBRA helped me with applying for the Disabled Students Allowance, which gave me access to all this information. They supplied me with an ergonomic chair to use at home to support my back and with various other equipment, which really helped me to study at home when my EB gets bad. There is a lot of help out there for us, we just need to ask for it. Some of my lectures in university take place in different blocks, which increases the amount of walking but with a blue badge (DEBRA helped me to obtain) I’m able to park close to the block where the lecture or seminar is and reduces the amount I have to walk.

– DEBRA Member (England)

It was important for me to dedicate time in my day just to catching up with coursework, and I often set my own deadlines for myself. Set aside time to work a little bit everyday so as to not get overwhelmed, and always ask for an extension: you are entitled to it.

– DEBRA Member (Scotland)

What was important to you? Do you have any strong memories – good and bad experiences?

It is frustrating that we often must begin our days very aware of our limitations. I was always so upset to miss school due to the social aspects of attending class. I felt as though my peers would "move on" without me. However, this wasn't true at all. Our bodies may be limited at times due to EB, yes, but our minds are not. Once I understood this, I felt like the world was opened up to me. We can move on to bigger and better things without our peers, not the other way around! 

 – DEBRA Member (Scotland)

Anything else you’d like to share?

You are so much more than your body and your limitations. Don't define yourself by them, even on bad days. We really are amazing.

– DEBRA Member (Scotland)