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The cystic fibrosis It is a genetic disease, autosomal, recessive with a permanent visceral handicap, which mainly affects the digestive and respiratory systems. According to the National Register of Cystic fibrosis, in Argentina, between 80 and 100 children are born per year who suffer from this pathology and, therefore, it is considered a strange disease.
“At first they called me celiac, they told me I was allergic because of the strong cough I was having,” he says. Daniel Lanzilotta, who has suffered from the disease since the age of 8. “It was like that until a doctor in Buenos Aires diagnosed me. Through my two-year-old sister who died, he told me that I could have the disease. hereditaryIf one of your brothers has it, chances are you will too. They did the sweat test which is still used to detect it. This is how I learned about my condition, ”explains Daniel.
“From there it was a slowdown, I had to start with treatments intravenous, physiotherapy, nebulizations. There are people who cannot go 8 years without being diagnosed, as happened to me, because their severity is greater. When I was diagnosed with the disease, my average lifespan was 25 years. My parents raised me thinking I was only going to live 10 more years. Every time I talk to them, I remember it, “said the man from Mendoza.
“The situation is very relative, my sister died at two years old and I am 46 years old. It depends on the severity of the case and the genetic mutation. It is not always the same for everyone. There are variations that leave you. a breath of life My situation is better than some and worse than others. I know people older than me, even in their sixties, who have been diagnosed with the disease. People who suffer from it must be treated every day, it is essential. Otherwise the mucus builds up in the lungs and suffocates you, clogging the pulmonary ducts. There are people who don’t take care of themselves and their lungs get blocked in less than two years, ”explains Daniel.
“Having this disease is a very big burden, it takes away a lot of things. Psychologically, it kills you because you don’t have the same freedom as other children, and when you’re a teenager you’re limited because you can’t do things like go dancing or go to camp. It happened to me in Mendoza that, being so high above sea level, I was very tired in the mountains, I couldn’t walk. In addition to the price of the treatment. I fought a lot for the disability certificate, which supports many of you treatments which covers social work. I would like it to be like that for everyone, but the sad reality is that this is not the case, we must go to court, ask for protection, “he laments.
A treatment that gave new hope
However, two years ago Daniel’s situation improved dramatically. “I came to Buenos Aires 6 years ago because I joined a lung transplant team, but in the end I didn’t, I started taking a drug, the best in the world for cystic fibrosis. , and that made it go list I have this other weapon: Trikafta. I started taking it last year, it’s “the pretty girl” with cystic fibrosis, everyone wants to have it, a lot of people take it. It allows you to improve the air that enters your lungs. I have a lung capacity of 32%, before it was 20%, very low, but without the drugs I would have much less. It can be doubled, depending on the case, ”says Daniel, adding that the drug is not very accessible in terms of price. In Argentina it has been around for over 2 years, many take it, but they need a lot of bureaucracy.
Daniel’s story is very special, he broke the statistics, he was able to pursue studies in social communication, he got married and had a daughter. “I tried so that my life wouldn’t be taken over by disease, to pretend I was doing nothing. Sometimes it can’t be done, but I still tried and partially succeeded. Sometimes. , it’s hard not to think about what it would be like if I didn’t have it, but the key is to move forward and do what’s necessary, legally and spiritually, ”shared the Mendoza .
However, during the pandemic he says that “it was a martyrdom, we were more exposed than anyone”. “If no one could go out into the street, we couldn’t even go out into the hallway of the building, it was to catch the virus and die,” he regrets.
One of the reasons Daniel can continue is Fipan, the Argentine Federation for the Fight against Fibrocystic Pancreatic Disease. “It is a very important body that brings us together, it supports you a lot from the legal to the psychological. It is worth gold for me. Without them, we would be much less protected in all areas,” he added. . declared.
Many people know his story and look to him for esperanza. “People called me to find out that I had exceeded my life expectancy. I am very careful in giving advice because not all situations are the same. I tell them not to be afraid, to know what kind of gene they have, because there you will be able to cure yourself properly Life expectancy has increased a lot, especially with the new medications. But there are still cases which are terminally ill, of boys whose lungs are directly covered and must be transplanted directly, ”warns Daniel.
Be in contact with other people who share the sickness It also helped him a lot. “I thought that meeting other people diagnosed with the same thing was going to constantly remind me that I had this sickness, so he didn’t want to see anyone. Then I realized it was a mistake. Now we have a WhatsApp group where we share our lives, what is happening with our treatment, what is happening with the cough in the morning, these exchanges are positive. I recommend it, a community where you rely on people who are like you, ”Daniel encourages.
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