"Lupus has not prevented Daniel from continuing to lead a normal life"

A persistent fever and extreme exhaustion were the first signs of the disease that brought Daniel to A&E of a Barcelona hospital one day in August 2022. ‘We went three times,’ his mother Pilar now recalls. ‘Every time they did blood tests and the values were altered, but the doctors didn’t really know why. They suspected that it could be caused by a virus and recommended that we wait to see how it progressed. But as the days went by Daniel continued to get worse.’

Daniel had been like this for eleven days when some spots appeared on his face. ‘We were terrified and decided to take him to A&E at the SJD Barcelona Children’s Hospital. They admitted him, and after three days, the doctors came up with the diagnosis and treatment.’ The professionals of the Rheumatology Department diagnosed Daniel with systemic lupus erythematosus, a chronic rheumatological disease that occurs when the immune system mistakenly attacks the body’s healthy tissues and organs.

‘It was a tough blow,’ Pilar recalls. ‘In time, we have tried to relativise it, to think that there are much worse diseases, but it is not easy. It is not easy to make your child see that the disease he suffers from will be with him for life,’ she adds. ‘As a mother, it is difficult to live with the uncertainty of not knowing if there will be another flare, if it will affect other organs in the future... Because the disease is active, the test values show that. But we are hopeful that when we get through puberty and all its hormonal changes that the disease will stagnate and give us a break.’

Daniel has had two flares since being diagnosed with systemic lupus erythematosus. The most serious, in February 2023, affected a kidney. He had lupus nephritis type IV for which he is still receiving treatment.

The disease has changed his life, but fortunately, it has not hugely restricted him. ‘Lupus has not prevented Daniel from continuing to lead a normal life. He continues to do everything he did before the onset of the disease, although he has to make a greater effort than any other boy his age. The year he was diagnosed with lupus, he missed a lot of school, but despite that and thanks to his desire to improve, he managed to pass the year with excellent grades. He is still playing basketball and doing all the activities he used to do. It must be said that you have to be especially careful: take six medications a day, rest, protect your skin a lot… And he does all that. He is very responsible, and we are really learning a lot from him. We are very proud of him,’ his mother concludes.