At first, he said that the mother was exaggerating. They felt that in reality, nothing wrong had happened with the girl. There was nothing abnormal in his body that was indicating anything. However, neither the mother was insane nor the daughter was pretending. At age four, Blanca Montegudo was finally diagnosed: with cystic fibrosis. Now that he is 40, he tells us his story.
“My parents knew something was wrong with me, but not what. I had severe stomach pains. My mother had to make my special food because everything made me feel bad,” says Blanca, who Recalls that it was not until they moved to Asturias (they lived in Albacete at the time) that doctors found the name and surname also causes cough, snot, and salty sweat.
Cystic fibrosis is a genetic and incurable disease that manifests itself from the moment of birth. This is a complex pathology that affects many organs of the body, although in each patient it manifests itself differently and to a different degree. Pulmonary involvement is the most severe and determines the prognosis, as persistent infections degenerate the tissue of this organ. Sometimes it is necessary to transplant.
A total of 36 years have passed since Blanca was diagnosed with this pathology. In most of them, he has fought his disease with different medicines. “Since my body didn’t assimilate or digest food well, I started taking digestives in addition to vitamins,” he says.
As for her liver damage, she started treating it with a drug whose active ingredient is ursodeoxycholic acid, which improved her liver health. In addition, he applied nasal wash for sputum and received respiratory physiotherapy.
Despite all this, Blanca’s quality of life barely improved. Till the arrival of Kaftrios. It is a drug that has proven its effectiveness in the treatment of cystic fibrosis in 70% of the patients suffering from it in our country. In December 2021, the Ministry of Health entered into an agreement with Vertex Laboratory for its funding.
Blanca was one of the participants in the clinical trial of this treatment. He admits that when he was offered this, he did not think about it for a second: “I was already waiting for it to be given. My quality of life has changed overnight since then.” Before Kaftio, he explains, “I was constantly getting infections. I took oral or intravenous antibiotics, depending on how they were. When I finished treatment, which was probably It was 14 days, not a week went by without another infection. It was like that for many years. The disease didn’t leave me. It was terrible,” he laments.
However, during clinical trials, he says, “everything completely disappeared.” This was the case, for example, with a runny nose and cough, “which I then had that was going to give me something at any moment”. Blanca, on the other hand, regained the energy she had lost: “I hardly exercised, just what was necessary. Now it is not difficult for me, it is not difficult for me to do anything”. In addition, the appetite that he no longer had, and because of this he lost weight.
Importance of participating in a clinical trial
Being part of a clinical trial is an opportunity for patients to prevent the development of diseases they are suffering from. From PharmIndustria, they summarize three main reasons why it is important to participate in this type of process: “First because a clinical trial is essential to drug development. Second, as patients we have a trial. It’s an opportunity to find solutions for yourself by participating. And, third and most important, because we’re helping bring about solutions that may benefit not just us, but many, many people in the future.”
Access to investigational treatments before they are licensed for sale, as well as the potential for treatments to play a role in discovering, curing, and preventing disease, are other reasons to participate in trials.
“A clinical trial is very controlled. They tested me and the doctors kept calling me. Consultations are scheduled”, stresses Blanca, who stresses the idea that these medical research studies can “change your life”. can change a lot”.