Patricio Bergesio, a 20-year-old young man from Rafaela, suffers from the rare disease 'Friedreich's Ataxia' and, in an interview with the 'Vamos Rivadavia' program on Radio Rivadavia AM 630, expressed his need for the medication to combat it.
In the program hosted by Nelson Castro from 9 a.m. to 12 p.m., the young man from the city of Rafaela in Santa Fe recounted this unusual disease that complicated his life: 'I was a normal kid, and at 11, I started to feel pain or heaviness in my legs while playing soccer, I became a bit clumsy, and we started to investigate all of this.'
'We were about 5 years without knowing what it was, until we did a genetic study and they told me 'Friedreich's Ataxia,' which we had no idea what it was.' Bergesio also described his day-to-day life with this disease: 'I go to the gym 16 times a week. Eight times a day I go to the gym and every morning on my own I do everything that has to do with my upper body.'
He also added: 'I used to study, but I dropped everything for my health basically to focus well on this. I would like to go back but with a better quality of life.' The medication he needs is Skyclaris, the drugs Omap, Velooxona, and this gives you a protein that is NRF12, which I need another one, but this one kind of replaces it.
The medication costs 35,000 dollars a month, which would be 420,000 dollars a year,' he added. 'It's extremely expensive and it's not available, now we are in an amparo proceeding with a request for urgent use, so that they can give it to me as soon as it's available.'
'From the age of 11, they used to tell me: 'Look, you're not going to walk anymore,' but I kept going to the gym and now I can more or less show that I'm in good shape.' 'Thanks to this medication that has come out, which I make such a fuss about to get, my quality of life would improve a lot. It made me very happy and I started with all this, talking to the doctors.'
Finally, Bergesio referred to his family and friends, pillars in this fight with the disease: 'My family is made up of my sister, my mom, and my dad, we are a small family and my grandma. And well, obviously I will show them sometime in some video of how I bathe, how I go to the bathroom, which are very difficult things that I do.'
'I studied two years of public accountant, I was missing one subject but I was not doing badly. Two months ago a guy from Uruguay had spoken to me, who had gotten it.'