Erythropoietic Protoporphyria (EPP)
Sometimes the pain takes hold of the psyche and then takes over your life completely. At such moments, I have often wished that my illness could somehow be more apparent to others. Sometimes when I am treated with condescension because the pain – which feels like boiling oil on my skin – is not visible, I think about people who are blind or paralyzed. Nobody doubts a person’s disability when they see them with a white stick or a wheelchair.
Thoughts like this are irrational – of course I am thankful that I don’t suffer from the additional problem of a visible disability. Despite this, the disease has a significant effect on my quality of life and it is hard to get away from the negative mindset – especially when doctors downplay the symptoms because they don't know what they are talking about or as a result of their lack of specialist knowledge about the illness. I always get angry when I hear similar stories from other sufferers.
While I would like to experience more understanding and sympathy for my condition, I can't stand pity at all. I have the disease, but Rocco Falchetto is not the disease – he is much more than that. While my illness has partly shaped who I am today, I still lead a fulfilling life and have achieved things that I can be proud of. This is another reason why it is so difficult for me to talk about it. People should get to know me first without knowing anything about the illness.
However, I now know just how important it is to tell my story.
It is high time that society takes the needs of sufferers of rare illnesses and diseases into account and the difficulties we face in finding treatments.