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10.12.2013

Five EB videos you need to watch

The internet is full videos on EB. You could spend endless hours on YouTube and Vimeo watching documentaries, personal stories and research updates. To help direct you, we have compiled a list of our top 5 videos on EB. There are many more excellent videos out there but we think these ones are really worth making the time to see.

The Boy Whose Skin Fell Off

This award winning documentary, which was produced by filmmaker Patrick Collerton, first came to our screens exactly 10 years ago. When it was first shown, the story of Jonny Kennedy captivated nearly five million viewers and helped to raise £500,000 for DEBRA UK. The Boy Whose Skin Fell Off was recently voted number 6 in the Channel 4 Top 50 documentaries of all time. The programme is currently available on YouTube.

Bandwidth and Bandages

Just released, this video was produced by the New Zealand TV production company, Attitude Pictures. It features Ashley Worthy, a 26 year old man from Waipu, New Zealand living with EB. He doesn't let his EB stop him from doing all the things he loves in life, most importantly saving the local radio station he runs.

The future of treatments for EB

DEBRA International has produced a number of videos on the research that is being undertaken to bring us closer to treatments and cures for EB. This 4-minute video doesn't compare with others on this list in terms of production quality but it does capture the views of some of the top EB researchers from around the world, on where the research is headed. If you want to get a sense of the depth and breadth of EB research and what we hope for from it, this is the one to watch.

Garrett: The boy beneath the bandages

Garrett's story was the winner of the Rare Disease Day 2010 Video Contest, run by EURORDIS. The video was produced by Andre Hermann, a professional photographer who has followed Garrett and his family for many years. This documentary provides insights into the impact of bandage changes and looks at how EB affects Garrett as he transitions into a young man.

The Butterfly and the Tornado

Meet Sam Hall, who prefers to be known as a storm chaser rather than an EB patient. This BBC documentary tells the fascinating tale of a girl with a very unusual and dangerous pastime. Sam travels from her home in the UK to the USA, to chase tornados and doesn't let EB hold her back. She is quite the tornado herself and this is a light-hearted tale that is worth a watch.

Do you think we missed anything on this list? If you know of any other videos on EB that people should really see, let us and the wider community know, through the DEBRA International Facebook page, or contact us.

Sinead Deasy, DEBRA Ireland

5 video screenshots of the videos presented in this news piece