Éric Tello is a “feliciano”. And that helps her a lot to cope with his illness. He is one of four people in Spain with progressive bone heteroplasia, an ultra-rare disease of genetic origin that causes bone to grow out from under the skin and causes enormous pain. Lumps began to appear at the age of two, but the diagnosis reached him at almost 15 and after many operations. Éric lives with pain on a daily basis “as if 100 daggers were stabbed into me”, something that forces him to take medication every four hours. This young man from Reus (Tarragona) is the oldest of the four patients with heteroplasia in Spain and he and his family demand more research and more psychological support to cope with a disease that today has no cure or treatment.
“The first time I had a lump I was two years old,” recalls Éric Tello. "She told me she had a pupa, they removed the lump and didn't give it any more importance," continues her mother, Esmeralda Valiente, 51. But the lump recurred in the same area (the lower part of the back) and this forced new interventions until, at the age of 12, he was referred from the Reus hospital, where the family lives, to the Sant Joan de Déu hospital in Barcelona. Thus began the long and hard road to diagnosis, with the warning that it could be a genetic disease. And the name came: progressive bone heteroplasia, an ultra-rare disease of which there are only four documented cases in Spain with that of Éric and of which this young man from Tarragona is the oldest patient. It is estimated that in the world there are about 65 people with the same ailment, so there are not many references to how the disease will progress.
The day they were diagnosed, the hospital summoned only the parents and although Esmeralda is full of praise for the health center and boasts of being "in one of the best hospitals" she missed a psychologist and believes that there should be protocols for accompaniment. She also remembers the thousand questions that arose and those that remained unanswered. "And you sink when they tell you that it is a disease that is not investigated."
For now there is no cure for Éric. No treatment. "He takes palliative care and medication every four hours," explains the mother. And he lives with extreme fatigue that very often prevents him from leading a normal life. “I can be sitting down and suddenly feel a big sting as if 100 knives were being stabbed into me,” she recounts. Despite this, he tries to do the things of a 15-year-old boy. “On days when I'm fine and my body responds to me, I go out for a walk… and if I decide to stay at home, a friend always comes,” she explains. The gang also changes their plans and stay quiet in the square if Eric's day requires it. Esmeralda, the mother, works in a supermarket and, like the rest of the family, they try to coordinate and combine her obligations with being aware of Éric and whatever she may need.
But the pain that this young man must endure is so strong - he explains that it started at puberty - that he has required several hospital admissions of about 15 days to control it. In one of these admissions, the mother remembers that at the hospital they let her out for a while with the line on so that she could cheer on her teammates at the La Pastoreta soccer club, where she has played since she was eight years old and where they have also understood Eric's illness and have adapted to his circumstances. "They keep his tab, although sometimes he can play five minutes," he explains. In football, his great passion, the limit will be set by him, as the pediatrician who monitors two other patients with heteroplasia in Spain warned him on a recent visit to Galicia.
Despite his health problems, Eric has managed to get ESO, partly thanks to the home service. A help that Esmeralda, his mother, regrets that he is now ending because with high school he ends the compulsory study. They are fighting because the degree in Computer Science that he will start studying in September allows him to blend in or follow some subjects from home for the days of most critical pain. He will have to get used to being in class at 8:30 because now there are days when he gets up at 12 "due to the effect of the diazepam," says her mother.
The bone sticks to the muscle of Éric and that is incapacitating him. Now he can't do the pincer with his right hand and, therefore, he has difficulties to write, so he studies with the computer. That is why rehabilitation is so important, explains Esmeralda. He now does two sessions a week and also exercises at home. They believe, although there is no certainty of this, that from the age of 20 the disease "does not disappear, but it does progress less quickly." And this is what they cling to. And perhaps at this time he will have to undergo surgery to remove new bone plates.
The only thing that can be done with Éric for now is to try to take away his pain (he has a 34% disability). And the young man has assumed his disease "living from day to day." He hopes that medicine will find at least one treatment that stabilizes the disease. With the diagnosis, this young man made the decision to "fight" and demand that it be investigated. And now he has a new incentive: he would like to apply computing to contribute to the investigation of his disease.
