The tenacity of José Luis Rodríguez, «El Puma», causing surprise to many after his appearance in a theater in Barranquilla, Colombia, on Tuesday night.
The 73-year-old Venezuelan singer delighted the audience by making an effort to sing while connected to an oxygen tank, which made his followers worry about his state of healthafter the images circulated on the internet.
«I expect a miracle from Christ for my body, we are on itAnd if God allows it, I’ll be here for a few more years or I’ll leave soon, I don’t know,» he told the Colombian channel Caracol after the presentation.
And it is that «El Puma» revealed a couple of years ago has suffered from pulmonary fibrosis since 2000.
It is a chronic disease, characterized by progressive scarring of the lungs that makes breathing more and more difficult.
«I had a very strong crisis on a flight from Los Angeles to here (Miami),» the singer told the Peruvian journalist Jaime Bayly in 2014.
«I was suffocating. I had no air, oxygen,» he explained while presenting his autobiography, «El Puma y yo.»
«There is no cure,» they assured him.
El Puma, then 71 years old, assured that he was «80% fine», thanks to «therapies and exercises».
Aware that his illness has no cure, he said he was not afraid of death.
«One is afraid of the unknown and of physical pain. But when one delves a little into the spiritual, he knows that death itself does not exist.»
To which the interpreter of Peacock or of I will lose my mind for your love He added: «I went in and I have to go out. I was born and I have to die. But if you give me one more chance, that would be great.»
«Rare and Cruel Disease»
«Idiopathic pulmonary fibrosis is one of those rare, orphan, little-known diseases.«Dr. Julio Ancochea, the research director of diffuse interstitial lung diseases (known by the acronym EPID), of the Spanish Society of Pneumology and Thoracic Surgery, Separ, explained to BBC Mundo.
The incidence and prevalence are not known precisely, but the pulmonologist considered that according to estimates it affects between 15 and 20 people per 100,000 inhabitants.
«It is also known to affect men more than women. and that it is an adult disease». Patients are diagnosed between 40 and 80 years of age.
However, the causes are unknown. It is associated with gastroesophageal reflux, some environmental exposures, and smoking.
«So quitting smoking could be a preventive measure,» said the expert in conversation with BBC Mundo.
Some researchers also speak of a genetic predisposition.
«It is a cruel disease,» acknowledged the specialist. «Its prognosis for survival is between two and five years from diagnosis. Much worse than most cancers.»
The prediction is not fulfilled in the case of «El Puma». Asked about this, the expert says he is unaware of the details of the case and explains that it could be the final development of another respiratory disease.
The diagnosis of this specific fibrosis is made by exclusion.
That is, first of all other diseases are ruled out. And once discarded, a CT or scanner is carried out, a medical imaging technique that uses X radiation to obtain a cut.
A lung biopsy is also performed and lately also a cryobiopsy, a new technique allows lung biopsies to be performed without having to open the chest.
«It has to be a very structured process,» he said.
Scientific «and ethical» challenge
Ancochea considers it a challenge for the scientific community to develop drugs and treatments that respond to patients with this condition.
«It is a scientific challenge, as well as an ethical one.«, said.
With the latter, he refers to the priority that large pharmaceutical companies give to the development of drugs to treat diseases with a higher prevalence.
«Companies also have a responsibility to invest in research for less common conditions.»
Studies related to these data from recent decades and many of the conclusions have been shelved as ineffective.
In 2011 the European Medicines Agency discovered the first drug to treat idiopathic pulmonary fibrosis, Pirfemidone.
Its American counterpart, the FDA, requested an additional study before giving it the go-ahead.
The research concluded that the drug slows the progression of the disease, but does not cure it.
However, it reduces mortality «significantly and makes the patient live not only longer, but better.»
It is the same conclusion of two parallel clinical trials on another drug, Nintedamib, published in the New England Journal of Medicine in May 2014.
However, they are medicines applied in moderate stages of the disease.
«In the most serious cases, in patients under 65 years of age, with a very limited life expectancy and when there are no contraindications, the only treatment is transplantation,» Ancochea clarified.
Therefore, he stressed that it is important to detect it before.
«It is important that public opinion is aware of the importance, but also primary care physicians, since by the time the patient reaches the pulmonologist it is usually too late.»
For this reason they improved that «famous people like El Puma put the issue on the table.»
*This note was originally published on September 19, 2014 and has been updated.