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"You're anorexic and apprehensive," but I was dying of dysplasia


"The doctors had no sympathy for a child who was sick, or a mother who tried to convince them that her daughter was not anorexic". Karin Losco He is twenty-two years old and lives with his parents in Solare (Milan). He loves to read thrillers and historical novels, but also loves Montale, Ungaretti and Pessoa. He writes poems in which he tries to describe his emotions, even if he does not let anyone read them.

Karin four years ago graduated in "health biotechnology" and subsequently enrolled in "food sciences", which however had to leave aside for health problems:

"At nine I was a very normal child: I went to school and danced.I never had any health problems when the first sporadic symptoms suddenly appeared: episodes of congestion and vomiting lasted about three years. "

At this point Karin continued to live normally: she became ill for a few days, but then everything passed and she continued to live without major problems. For eleven years, however, the symptoms have become increasingly frequent and aggressive, leading to difficulty eating:

"More and more food made me sick and the few that I could tolerate were minimal, like this I also started losing weight".

The doctors consulted argued that the problem was to be him a very apprehensive child. They started a series of visits and exams from one hospital to another, until they did not know where to go to find a solution … Until the age of twelve Karin could hardly feed more, while his weight dropped more and more.

"Same drinking a glass of water has become a venture It made me sick for hours. I began to be followed in a well-known Milanese hospital, where a true nightmare began for me that I will never forget. "

All tests revealed that Karin had a dilated stomach, but no one seemed to take it seriously. The diagnosis was simple: anorexia. A conviction!

"I was given a nasogastric tube." My stomach, however, as it turned out, was completely paralyzed, so the nutrition they sent to my stomach gave me pain and other terrible symptoms. nobody kept believing in me, thinking that, as anorexic, I did not want to do nutrition to not gain weight. "

The months in this department left a much deeper mark than subsequent surgical procedures. Finally, all the local hospitals were filmed, a gastroenterologist was recommended Bolognese.

"I did not trust anyone or anything anymore, I thought that even this attempt would lead to nothing, since now many doctors have been consulted and everyone has agreed to anorexia." Instead Prof. Stanghellini, after visiting me and having read the examinations made, he was diagnosed with gastroparesis: My stomach was completely paralyzed. Then he immediately made me remove the feeding tube with the enteral nutrition that had been my torture in the last few months. "

After a few weeks, Karin was admitted to the Sant'Orsola hospital for further examination, initiating parenteral nutrition, or through a catheter inserted into a central vein that reaches the heart. Finally, biopsies were taken by removing various parts of the stomach and intestines that led to a final sentence: "Intestinal neuronal dysplasia type B", a very rare disease that affects the intestinal nervous system, bringing the stomach and intestines to move little and in an uncoordinated way, making them unable to knock down the food, causing only pain.

"I was also given a gastrostomy, a small tube in the stomach to remove the accumulating fluids, so as to avoid nausea, vomiting and bloating. Having understood the type of illness, they tried to give me several treatments, but none of them worked. At this point, Prof. Lima, a pediatric surgeon who still follows me, though I am twenty-two, underwent gastrointestinal anastomosis surgery to try to reduce at least liquids, since I could not drink a sip of water. "

It was a great intervention, but served to be able to drink again and savor soft foods: a huge joy for Karin! Unfortunately though in those months the disease progressed, beginning to affect the bowel as well: occlusions and new pains began, as well as other examinations, other treatments and hospitalizations. Numerous central venous catheter infections for nutrition have also begun, as well as increasingly complicated replacements.

"After several intestinal occlusions I underwent total colectomy removal of the entire colon, and. Subsequently the pains and occlusions did not improve, so it was understood that until now the whole intestine was compromised: a new intervention of ileostomy followed to avoid the occlusions. I was also put on the list for a multivisceral transplant (stomach, intestine and pancreas), but given the high number of failures of this type of transplant, after being on the list for almost a year, I was told that this would not be done. "

The girl had placed so much hope in this unique opportunity to improve the quality of her life, but the pains were getting stronger, since no medication could calm them, so she started a pain therapy based on morphine which lasts today.

"In all this, I always continued to study, even in the worst periods, in the hospital or at home. I graduated in health biotechnology with 80/100. I am passionate about everything that is scientific and can be experienced, so I am an atheist and, as soon as I was eighteen, I was beaten. I think you should have something because you believe in this particular thing. In the same month, I got my driver's license and bought my car: a small used Smart that I still use for a few rounds in the city. "

Currently Karin lives for twelve hours on parenteral nutritionin the evening. During the day, various administrations of morphine keep their pain under control, but it also lives with many other drugs for the stomach and intestine, due to the consequences that the disease has caused over the years.

"Just 20 days ago I went through a new surgery to removal of the gallbladder. Lately, in fact, in addition to the usual pains, severe cramps have been added. "

During the day he studies and, if his health permits, he will walk around listening to music. But your dream continues to be able to graduate and find a job as well, of course have the opportunity to do the transplant a day not far away. Unfortunately, success rates are still very low.

"What weighs on me more than pain is depend on parenteral nutrition. Initially, it was very difficult to accept, but having no other choice, I learned to live with it, even if it remains a great burden. I continue for myself, but above all for my mother who has always been by my side and who understands me more than anyone else. I try to do everything without letting myself be conditioned by problems, because living in fear does not help. "

In Karin's body they remain numerous scars beyond the sostomy bag in his stomach but if he wants to put his swimsuit on and go to the beach or pool, he tells me, he does it without any problem or embarrassment:

"I do not care about people's opinions. who watch or judge out of curiosity or ignorance. Although, to be honest, I've never liked going to the sea, I prefer the mountains, the cold and the walks: when I walk, nobody can keep up, everyone tells me I'm running. "

Nonetheless, she knows she can count on trained, helpful and kindhearted doctors ready to help her on all fronts, even if she is not feeling well.

"I learned to appreciate everything and every moment, whether it's an afternoon at the movies with friends or a family home evening. The experience in the Milanese hospitals made me realize that not everyone does the work they choose with their hearts, even if it involves helping those who suffer. That's why I wish these words came to those who initially treated me like a psychopath, mocking me while I could not even move the pain. "

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