HRH The Duchess of Edinburgh

"The issues for those living with EB are compelling and emotive and this is what has drawn us all towards supporting such a worthwhile cause. I feel that my life has been enriched by the experiences I have had since becoming Patron of DEBRA, mainly through the patients I have met at a variety of functions. I never knew how much the human body could withstand in terms of suffering until I understood more about how people with EB live with their condition. Yet through all the pain, the scars, the trauma, the endless process of skincare, the drugs, the emotional burden, the staring, the exhaustion of it all, I have never met a more positive and determined bunch of people. Regardless of their age or condition they have made it their mission to live life to the full. Their attitude is incredible and uplifting and they provide a salutary lesson to us all in how to take what we have and make it meaningful."