uptech schreef op 22 april 2016 11:31:
Deze?
A few days ago, I was contacted by Jasmin who asked me to document a small demonstration and protest in Canary Wharf. As I was not teaching in the afternoon, I happily joined the team as one of the official photographers. I must admit I had never heard about the EPP health issue before so I would like to share what I have learnt today with you. EPP or Erythropoietic Protoporphyria is a genetic disease that affects one person out of 100 000 (if I remember well). Symptoms include acute pain and severe burns after a direct exposure to sunlight or halogen lights. Patients often have to stay in darkness or at least protect themselves from the sun (with hats, umbrellas, scarves...). There is now a treatment for EPP but because of European regulations this is not yet available in Europe and treatment is too expensive. Today 21 patients and family members travelled to London to demonstrate and protest, walking from West India Quay to the European Medecine's Agency in Canary Wharf.
I was really glad I could join the group and happily wore the beautiful bright t-shirt. This made me realise how much I love this type of photography with a social and humane purpose: Documentary photography.