The time trial of Mariana, the young Mexican woman with cystic fibrosis

The time trial of Mariana, the young Mexican woman with cystic fibrosis



Mariana Vallejo today has a fight against an illness and against time. If in a month and a half you can not raise 9 million pesos (about $ 465,116) it is likely that your lungs will not resist any more and lose your life.

The 23-year-old girl suffers from cystic fibrosis, a disease that, among other things, causes the lung secretions to become thick and sticky and thereby obstruct the respiratory passages and, if not properly treated, the lungs are damaged until not work anymore.

Mariana says that she had a normal life until at 16 years of age a pneumonia took her to the hospital "there they realized that there was something wrong with my lungs, they make me studies and they realize that I have cystic fibrosis", tells Efe.

This condition, explains pulmonary pediatrician José Luis Lezana, "is a genetic disease, it is not acquired, it is not contagious".

It is a defect in chromosome 7 where a gene is not able to produce the CFTR protein, which regulates the entry and exit of water and leaves in tissue cells such as the respiratory, digestive, pancreas, reproductive system and skin.

"In fibrosis, that protein does not work, and the alteration of water and salt exchange causes the symptoms of the disease," explains the medical director of the Mexican Association of Cystic Fibrosis (AMFQ).

For this disease to occur, both parents must be carriers of the defective gene, although they are only 25% likely to have a child with the disease, 50% have a carrier child without developing the disease and 25% have a totally healthy son.

This is a condition considered rare, and in Mexico the frequency is one for every 8,500 live births.

"This means that every year 350 children are born with this disease, but only 15% are diagnosed," says the expert.

One of the fundamental points to delay the damages and complications of the disease is the opportune diagnosis, which, the specialist assures, must be done in the first six months of life.

This, in addition to the timely treatment and care of the child, makes the life expectancy of 45 years in industrialized countries.

"But in Mexico and Latin America it is 18 years because the diagnosis is late, there are no specialized centers or access to treatment," says Lezana.

Mariana was diagnosed late when the damage to her lungs was very advanced.

Today, the young communicator must take a strict treatment, which includes in her routine nebulizations, medications, therapy, a vest that she must use to help her get rid of phlegm and use oxygen 24 hours a day.

However, the transplant is ideal because your lungs do not work.

"I need 9 million but it's a money that I do not have, that's why I made the campaign" Breathe with Mariana "with which I sell bracelets, shirts, everything possible to collect that amount," he says.

The donations, he said, are tax deductible and he hopes he can reach his goal in the next 45 days.

"I have many dreams, I want to continue living," he admits.

Since her diagnosis, Mariana has had the support of the AMFQ, an institution that emerged in 1982 following parents who had a child with the disease.

Guadalupe Campoy, director of the organization, explains that money is one of the main problems faced by patients with this disease.

"It is a very expensive, progressive and deadly disease, the cost is about 80,000 pesos (about $ 4,130) a month for a child who is not very serious, for other people it can be much more," she explains.

Although Mexico has made progress in improving diagnosis through neonatal screening and the creation of specialized clinics for the condition, the main problem is that there is still no adequate access to treatment.

"We are about 30 years ago with respect to developed countries," says Campoy.

Although it is a disease covered by the Seguro Popular-a government entity that protects those who do not have another type of social security-it only attends to children who are diagnosed between 0 and 5 years of age.

On average, says Lezana, in the country children are diagnosed at 2.6 years old, but most have a diagnosis beyond their first five years of life.

For now, the AMFQ works to attract the treatment protocol that the United States has, which is based on an interdisciplinary management of the disease.

Meanwhile, Mariana continues to trust that her case will help not only to put this disease in her eye, but to save her own life.

"I'm on all social networks like 'Breathe with Mariana', any support will be important to achieve my transplant and save my life," he concludes.

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