Scleroderma: Rafaela’s story, Spain

Scleroderma: Rafaela’s story, Spain


I felt better having a diagnosis, but furious that there was no solution for it. So, it was a fight, a very hard one. The first thing you do is look it up – read. Back then the outlook was very black, and life expectancy was ten years maximum. I went to a conference in Madrid. I saw the disease face to face. I was afraid. But you see people, you see they want to fight, I mean, through scleroderma, we are a network, we are a family. It helps a lot. It is an excellent association, with great people and support. Little by little we achieve things, and together are reducing the fear. It is beautiful, truly. You learn to live with systemic sclerosis, but not everything in life revolves around it. You try to lead a normal life. In fact, I’ve achieved what I wanted to, My children are grown up. I am a grandmother. What more can I ask for? I didn’t see the disease as an enemy. I saw it more as a travelling companion, but we are never going to be friends in life. I know it is there, at times it beats me, but I try not to let it, and we carry on, day to day. Simply. But it’s hard, it is hard. What happens is with all of the treatments, the hospital: it’s our second home. So it is every week, every day. Doctors, doctors, doctors. It used to be every six months, but now it is constant and it gets tiring. I love walking in nature But suddenly I had to stop, But I always try to spend time in open spaces. It gives me life. A sense of peace, relaxation. If I can be a small example to someone maybe I can give them a little energy or strength to carry on, or something like that, Because, I think that after so many years, with systemic sclerosis, we are here, we are still fighting And moving forward. There’s no other option. They diagnose you, whatever, but you have to keep going. You have to keep going. You have to keep going.

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