Every year, from their offices near Paris, EURORDIS launches a photo and video contest to raise awareness for rare diseases. Initially it was an independent project, but in 2008 it become a fundamental part of the Rare Disease Day event.
“Julia Fitzgerald, our webmaster, came up with this idea in 2006 as a way to create awareness and build up a library of photos depicting a variety of rare diseases (which did not exist before),” says Paloma Tejada, EURORDIS Communications Manager.
The 2010 edition counted more than 240 photos and 30 videos entries from all over the world. The winners were recently announced:
Photo entry: “Together we have more power, and more fun” by Ilona Brandt (Germany)
Ilona Brandt (left) and her twin sister Claudia (right) cool their toes in a fountain. “We share fun and misery. It’s not fine, but it’s okay. We’re rolling along our path, and we’re happy to be able to have some fighting spirit,” says Ilona.
The Brandt twins have been living with Spinal Muscular Atrophy (SMA) Type IIa since they were born in 1968.
Video entry: “Garrett: The Boy Beneath The Bandages” by Andre J. Hermann (USA)
“Garrett Spaulding, 12, was born with the rare skin disease Epidermolysis Bullosa, over 50% of his body has open raw sores similar to a 3rd degree burn victim. His bandages have to be replaced up to 3 times per week. Often times, in the more severe parts of his body the bandages stick to open soars causing an extremely painful situation when removed”, say Andre Hermann, the professional photographer who developed this project. ” Due to this, Garrett will not let his mom remove the problematic bandages as she normally does. He demands to do it himself. Because of this the bandaging process can often take up to 5-hours to complete”
To watch Garrett: The Boy Beneath The Bandages, please follow this link to Youtube. The complete photo essay Garrett: The Boy Beneath The Bandages is here for viewers to see.
Andre J. Hermann lives in the USA and is a professional photographer.
The winner and ten photo contest runners-up are collected in this photo set.
Enjoy more fine videos from this year’s contest on the Rare Disease Day video channel and more striking photos in the Rare Disease Day photo gallery.
What is Spinal Muscular Atrophy, Type IIa (SMA)
SMA is an inherited neuromuscular disease characterized by degeneration of motor neurons, the nerves cells responsible for voluntary movement. It involves progressive muscle weakness and wasting, but the sensations and the ability to feel are not affected. These patients often require comprehensive medical care involving multiple disciplines
What is Epidermolysis Bullosa (EB)?
EB is a rare inherited skin disorder characterized by separation of the layers within the skin, which results in fragile, blistered skin. The blisters usually heal without scarring and the skin that is most often placed under trauma (feet and hands) is the most affected.
Sources: CheckOrphan, Eurordis, Wikipedia (SMA and EB)
Photo and Video Credits: Ilona Brandt and Andre J. Hermann (www.andrehermannphoto.com). Used with permission. All rights reserved.
>>Read more at CheckOrphan blog