3 petitions

Started 2 years ago

Petition to Michele Emiliano, Michele Emiliano, Mario Cosimo Loizzo, Giuseppina Annicchiarico

I have the right to health care without age restriction.

Hello, my name is Chiara and I was born with a rare genetic and degenerative condition called multiple exostosis, a strange name to describe the fact that my body produces more cartilage mass than normal. Because of this, I’ve had numerous surgeries to regain joint movements or just to free nerves trapped around the cartilage. Needless to say that my illness has a great impact on my everyday life as I often have to depend on others even for simple things, like tying my shoelaces or washing my hair. Unfortunately in Apulia, which is the region where I live in Italy, there are no specialised centres for treatment of exostosis. For this reason I AM FORCED to frequently travel to other centres to be monitored and treated and, when I am in severe pain, I may need to buy plane and train tickets at the last minute. And I need to pay accommodation costs on top of this. Of course this has a great financial impact on my family. In my region, article 13 states that “reimbursements provided by article 1, paragraphs 1 and 2 of the regional law dated 21st November 1966, n.25 and since amended (reimbursements of expenses sustained for transplant surgery undertaken) is extended to citizens up to 18 years of age who, due to documented medical needs, need to travel to other regions to treat rare conditions when this is not possible in Apulia”.  Considering that I am 18 years old and that I still have this condition (not surprising, as I will have this condition for the rest of my life), I call on the Regione Puglia to make sure that patients who suffer from rare conditions have the right to health care without age restriction. As patients, we fight for our rights and we need institutions to support us, or at least guarantee the right to ALWAYS receive treatment.

Chiara Racanelli
182,892 supporters