Éric Tello is a "happiness". And this helps him endure his illness. He is one of four people in Spain who have progressive bone heteroplasia, an ultra-rare disease of genetic origin that causes bone to come out from under the skin and causes him enormous pain. Lumps started to appear when he was two years old, but the diagnosis came at almost 15 and after many operations. Éric lives with pain every day, "as if 100 daggers were stabbing me", which forces him to take medication every four hours. This young man from Reus (Baix Camp) is the oldest of the four patients with heteroplasia. He calls for more research and psychological support to endure a disease that has no cure or treatment for now.
"The first time I had a lump I was two years old", remembers Éric Tello. "He told me he had a pupa, they took out the lump and didn't give him any more importance", continues his mother, Esmeralda Valiente, 51 years old. But the lump reappeared in the same area (the lower back) and this forced him to have new interventions, until at the age of 12 he was referred from the hospital in Reus to Sant Joan de God (Barcelona). The long road to diagnosis began, with the warning that it could be a genetic disease. In Spain, there are only four cases like Éric's and he is the oldest patient. It is estimated that there are around 65 people in the world with the same disease.
On the day they were given the diagnosis, the hospital called only the parents, and although Esmeralda praises the health center a lot and boasts that it is "in one of the best hospitals", she missed a psychologist and believes that there should be accompanying protocols. "You sink when you are told that it is a disease that is not investigated".
For now there is no cure for Éric. No treatment. "He has palliative care and medication every four hours," explains the mother. And he lives with extreme fatigue that often prevents him from leading a normal life. "I can be sitting and suddenly feel a big stab, as if a hundred daggers were stuck in me", he says. Despite this, he tries to do the things of a 15-year-old boy. "On days when I'm well, I go out for a walk... And if I decide to stay at home, a friend always comes," he explains. The gang also changes plans if Eric's day requires it.
But the pain this boy has to endure is so strong – he explains that it started during puberty – that he has required several hospital admissions to control it. In one of the latter, the mother remembers that they let him go out for a while with the track on to cheer on his teammates at the La Pastoreta football club, in which he has been playing since the age of eight and where they also contracted the disease Eric "They keep his card, even if sometimes he can only play five minutes", he explains.
Despite the health problems, Éric has managed to get his ESO, partly thanks to the home service. A help that the mother regrets that it now ends because with secondary school the compulsory study ends.
They are fighting so that the Computer Science degree that he will start studying in September will allow him to attend part-time or follow some subjects from home for the days of the most critical pain. Éric trusts that medicine will find at least one treatment that stabilizes the disease. With the diagnosis, he made the decision to "fight" and demand that it be investigated. He has a new incentive: to contribute to the research of his disease.
