Francesca Granata introduces herself
I discovered the name of my disease, erythropoietic protoporphyria (EPP), during a biochemistry lesson in 2008 while I was at university for my studies in biology. Before that moment, I had lived for 23 years trapped inside two different types of shadows: a physical shadow and a mental one. The first was due to my condition; in fact, the symptoms of EPP, triggered by exposure to light, include burning sensations, acute skin pain, itching, oedema and skin lesions, which led me to live without the sun. The second shadow was due to the inability to find an answer and the difficulty of explaining the limitations of my life without a diagnosis.
Therefore, after this defining moment, I started to work at the Porphyria Center of Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico di Milano, in order to improve knowledge about EPP.
In 2016, after challenges related to the access and reimbursement of afamelanotide in Italy, the only drug that addresses our daily pain, I felt compelled to work on patients’ rights through the dissemination of knowledge about the porphyrias and the available therapeutic options. I began by raising awareness about the lack of equitable access to afamelanotide in Italy through a successful online petition.
During the years that followed, I met a lot of people with EPP and other porphyrias. Meeting with EPP sufferers with a scientific and medical background was particularly inspiring and motivating, and together we set up the International Porphyria Patient Network to advocate for therapy access by providing our perspective both from a patient as well as a scientific angle.
We achieved many goals internationally through meeting with competent authorities, working on dissemination of information and patient empowerment. In Italy, I continued with my research activity, through publication of scientific articles on peer review journals and in the mainstream Italian media, raising considerable interest and support for our cause. I was also responsible for the organization and moderation of the International Porphyria Patient Day as part of the International Congress on Porphyrins and Porphyrias, held in Milan in September 2019, a demanding but rewarding experience, which brought together patients and patient organizations from all over the world.
I look forward to continuing to advocate for porphyria patients and contributing to the mission of the IPPN!