LAST WEDNESDAY a gathering of Murcian health officials met in La Plaza de Romea de Murcia to mark national Cystic Fibrosis day.
Cystic Fibrosis is a modern day disease of genetic origin affecting one in 4,700 newborn children in the rRegion of Murcia. In fact every year between two and three new cases are diagnosed within the region.
Throughout Murcia, 130 patients are in medical follow-up, receiving treatment for this respiratory disease that progressively damages the lungs, ultimately causing pancreatic failure.
According to data from the Regional Cystic Fibrosis Unit, of these 130 patients, 113 are undergoing treatment, for which the Murcian Health Service (SMS) allocates more than 720,000 euros per annum, and 12 have already received a lung transplant.
Since 2007, the Centre for Biochemistry and Clinical Genetics of the Ministry of Health has carried out the so-called ‘heel test’ on an annual average of 18,000 newborn babies in the Region to determine whether they show signs of the disease.
Thanks to the efficiency of the testing procedure, they have been able to detect between two and three new cases of Cystic Fibrosis each year.
This clinical trial for early detection of congenital metabolic diseases consists of heel punctures performed on the newborn infant to obtain a blood sample.
Early detection allows the newly diagnosed babies to be referred to the Regional Cystic Fibrosis Unit, located in the capital’s Arrixaca hospital.
Care for newborns in the specialist unit allows for treatment to delay the evolution of the disease, alleviate possible complications, prolong the life expectancy of those affected and improve their well-being.
The basic treatment for the disease establishes adequate nutrition and uses medicines created to fight infections and respiratory inflammations.
In addition the specialist team of doctors regularly perform therapy including respiratory physiotherapy, strengthening exercises of the thorax muscles and the practice of exercise and sport.
The Murcia Association of Cystic Fibrosis celebrates its 30th anniversary this year with an awareness campaign with an objective to improve the quality and life expectancy of people who suffer from this delibitating illness.
The association, whose motto ‘’You breathe without thinking, I only think about breathing’’ was initially set up to support the early diagnosis of the disease and to carry out the proper treatment by specialists doctors and nurses.
They are also there to ensure patients receive appropriate hygiene and correct treatment and medication for each individual case administered early in the symptoms of the disease.