Lena is Austrian; she is 25 years old and has EB. For the last year Lena has been working at the charity helping with our fundraising campaigns, inspiring so many of us and teaching us a valuable lesson in life.
What is life living with EB for you?
To be honest living with EB is normal to me. Everyone has their issues, things that they have to learn to live with.
Has your condition changed from when you were a little girl?
It has improved a lot. When I was very small most of my body was bandaged because of the severity of my wounds and the bandages also helped to protect me. Now I don’t need bandages. I still get blistering and wounds, but my skin has improved significantly. I am not sure why this is, I am fitter and emotionally stronger and I know how to look after myself now.
You use your social channels and seminars to raise awareness for the disease. For many people with EB and their families you are a true inspiration. How does that make you feel?
Every time I receive these wonderful messages from a mother who has a son or daughter with EB or from a person affected by the condition I am always surprised. I am not used to people telling me I give them strength. Hearing this makes me very happy. I feel lucky to be able to share my experiences and help others. This is one of the positive aspects of living with the disease
We have read in some of your posts that this confidence came from a long process of acceptance.
This process has taken a long time and I am still on this journey. There was a point in my life that I realised I could change the way I felt and I was in control of this. I made a decision to live my life. I am now much more confident, I can talk about my condition and I can explain what it is like to live with EB. This also gives me strength. I have never had a negative reaction. The majority of people say very kind things and for this I am ever grateful.
Your sister is a very important pillar in your life. Can you recall an anecdote or any advice that has helped you?
Emma gives me so much strength and encouragement. I remember a very lovely anecdote. The first time I went to the beach on my own I was nervous because people would see my wounds and the scaring on my body and I did not want to be stared at. But, my sister said: Just enjoy that fact that everyone will be looking at you, you are beautiful and the beach can be your catwalk.
You are a very independent person who has lived and travelled in many different countries. How do you manage looking after yourself when you are not at home in Austria?
When I travel or live for any time in a different country I always make sure I have a supply of bandages and other necessary products and medication. I have been lucky enough not to run out and I can also rely on my parents to help if necessary
In the last year you have been helping with the DEBRA Butterfly Children’s charity and you have also worked with DEBRA-Austria. How would you define the work of DEBRA worldwide and more specifically in Spain?
What I can say with complete certainty is that in both the DEBRA organisations I have collaborated with all of the people who work there do so from the heart. Both teams have a passion for helping and supporting people with the condition. The fund raising style is a little different, but this is very normal given that you are dealing with two different cultures with different resources available. I loved being a part of DEBRA Spain and I was welcomed from the very beginning and treated as a member of the team. They also encouraged me to do some things I never thought I would be able to do like give talks in English and Spanish.
Your positive outlook has touched all of the members of our team and to round up we would love to hear what you have learnt from EB and a little about the special people it has enabled you to meet.
Sometimes when I talk about the disease and I am in a good mood I tend to focus on the positives. I do this so much that sometimes I worry that people will think that EB is not as hard as it seems and that they may question why DEBRA needs to continually reach out for financial help and support.
This couldn’t be further from the truth. To be positive is part of my character and this does not mean that it is not a difficult disease to live with. I have learnt to be positive, accept the condition as a part of me without letting it take over my life.
It is like an old friend that it always by my side, a friend I live with. A friend I have conversations with, sometimes we argue and those discussions can open up at any time.
So, I have learnt to know that today I may be in less pain than tomorrow, but that tomorrow I am y not be able to walk from the pain. I need to wear specific shoes or clothing and that I will need to take my medication and stay at home.
I have learnt to read my body, my old friend who may or may not be in a good mood for me today.