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Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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An introduction to the world of EB Without Borders

An introduction to the world of EB Without Borders

Have you ever wondered how people with EB live, in countries where there is no help available?

Imagine. Can you remember when you were 7 years old?

Now can you imagine having to be always at home, never playing outside and never going to school because of your wounds? You can’t play or be around other children because they might hurt you, sometimes deliberately; even adults can stare and question you. Your parents love you the same as any parent loves their child but your parents know nothing about why your skin blisters and tears, and they don’t know how to take some of your pain away. Your parents tried taking you to doctors but the doctors didn’t know how to help you either and (without you knowing) the doctors gave them no hope for your future and eventually your parents stopped asking.

Or imagine being a young adult, things aren’t too bad, you live in a small village with family and friends and you imagine in your future a happy marriage. You have always had wounds but they were manageable. Then one day you found a tumour and the doctors had to remove your leg below the knee. Then war came and the hospitals stopped working and you had to leave your village and some of your family and friends and travel to another country. Then the tumours came back and your dream of marriage is now just that, a dream. And unless you can find treatment in this unfamiliar country, any future at all, is just a dream.

These are just two examples of 
EB Without Borders cases and their stories may sound overly grim but the truth is living with EB in many environments is harsh and unnecessarily not-survivable.

Together we can show there is a better vision of the future, for these and other people living with EB. There are over 50 groups world-wide which form part of our DEBRA network, however many other countries are without good knowledge of EB. Through continuing to develop our networks in countries where there is not yet a DEBRA structure, EB Without Borders is able to help local families, patients and clinicians, to support them and assist new groups to develop. 

In future editions of this newsletter we will tell you more about the work of EB Without Borders with some of the uplifting stories about the change we are making. We also plan to have some of the newly established DEBRA’s tell their fascinating stories of the journey from feeling like being the only one to the discovery of being connected to an international network of people who truly understand.

Lea Prujean, EB Without Borders Coordinator, DEBRA International