Eva avec la pompe qui lui sert la nuit pour se nourrir. Midi Libre – JEAN-MICHEL MART
La Montpelliéraine de 20 ans cartonne sur les réseaux sociaux avec ses vidéos où elle dévoile les conséquences de la maladie avec positivité et pédagogie.
She is not very tall, but even with her slender size, she commands respect with her determination and courage. Eva, 20, has a career that is far from enviable. Born with an esophageal malformation, she spent her childhood in hospitals.
This pathology, called esophageal atresia, is not so rare since it affects one in 10,000 babies in France. Eva, on the other hand, will be a medical case apart and even unique. “I must be the only one in the world.”
A childhood to be operated on
As a child, she was quickly directed to a cutting-edge service in Lausanne, Switzerland. “So I spent my adolescence alone, often far from my parents. Loneliness really weighs.”
For years, she had to undergo multiple surgeries to rebuild this failing organ. “In ten years, they first took a piece of my colon to repair it, it didn't work, then a muscle from my shoulder, a piece of my back, among other things, to end with a part of my stomach or my intestine…”
The successive failures will end with a radical decision. In 2014, the great specialist decides to completely remove her esophagus. As a result, her mouth and stomach are not connected. “By doing that, he saved my life.” She even launched an appeal on the networks to find this famous surgeon, Professor Olivier Reinberg.
@_.morphine.__
Olivier Reinberg, you never finished your job. Live tonight à 10 p.m.!! #fyp #foryou #foryourpage #foryoupage #fypシ #esophagus #atresiedeloesophagus #gastrostomy #pathology #disease #malformation #diseaseare #invisibledisease #birthdefect #enteralnutrition
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A daily life that is not always easy
Beyond a childhood with its share of suffering, she had to adapt to this body free of this organ of the digestive tract. Concretely, it cannot feed itself through the mouth. “I don't eat like everyone else…” Small advantage, “diet-wise, at least I'm not too bothered”.
She has a probe installed above her navel that connects the outside of her body to her stomach. “With this gastrostomy, I feed myself at night. I connect to a pump that diffuses the product present in nutrition bags. And during the day to hydrate myself, I simply take a large syringe filled with water and transfer the liquid directly into my stomach.”
It was also her father who made her “the button” on her stomach with a 3D printer to avoid untimely discharges which with the acidity burned her skin.
She can still put food in her mouth
200% Deposit Bonus up to €3,000 180% First Deposit Bonus up to $20,000But there are much more restrictive things in her daily life. Because even if most of her esophagus was removed, part of the “pipe” was kept connecting the mouth to an orifice created in her neck.
She can then “eat” or at least introduce food into her mouth in order to enjoy a taste pleasure. “It is especially necessary to work the jaw, if you don't chew your teeth fall out.”
Only anything that goes into her mouth cannot go down into her body. Everything is therefore expelled by this sphincter. “So I have to stick a bowl to this hole or some container to collect the food and then empty it all into the toilet.”
As for the saliva, it also flows. The young lady is therefore obliged to wear a bib to absorb it all day long.
@_.morphine.__
FAQ: Without Esophagus, Part 2 ud83eudd0d Don't hesitate if you have questions ?? #fyp #foryou #foryourpage #foryoupage #fypシ #esophagus #atresiedeloesophagus #gastrostomy #pathology #disease #malformation #diseaseare #invisibledisease #birthdefect #enteralnutrition
u266c original sound – MORPHINE
A possible graft
“When I was little, I was told about a possible transplant. Which was impossible at the time, we had to wait until we were an adult. I naively thought that they would contact me again, but nothing happened”, she confides.
For years, her medical follow-up has consisted only of two annual appointments with a gastroenterologist, “and the nutritionist once a month to adapt my diet.”
However, before planning a possible transplant, Eva wants to prepare herself. “First of all, I don't know if this procedure is really possible and who could do it. And I was fiddled with so much for years that going back to this life of hospitalization, surgery, rehabilitation with all that it entails……"
Even if she doesn't feel ready yet, she doesn't rule out this step. “But later. For now, I'm focusing on my mental state. I need to stabilize myself on that first. It's important.”
Because beyond the physical, this pathology has affected her psychologically. But the positive comments from her TikTok account subscribers keep her moving forward.
The weight of other people's gaze
“When I was invited to birthdays and I had cake, the children found it disgusting. That look is always heavy, it's very difficult mentally. And even if I can understand it, it's hard to take. I suffered a lot from it. Today, I have much less difficulty going to a restaurant, but it still bothers me.”
It was finally through social networks that she managed to change the way others looked at her, but also her own, to accept herself. Something that wasn't planned at first.
“My presence on TikTok, it fell on me a bit by chance. There was a trend – a trend – “I don't have… so obviously…”. I posted a video, it went viral. And I kept going. There's even a video that reached 5 million views.”
@_.morphine.__
I don't have an esophagus so of course I feel compelled eacute;e to make this trend ud83eudd2d #esophagus #malformation #bad luck #fyp #foryou #foryoupage #of course #of coursethat
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Even if the young woman does not appreciate the “notoriety” too much, she does not intend to stop. “It brings me a lot of love and I agree to share my story and answer questions because when I was little, in the hospital, I would have liked to have a person who explains to me, who accompanies me through videos, I would have felt less alone.”
Because giving strength to others, “it gives me some too. Showing that the girl who has lived through atrocious things can stay smiling is very strong.”
“And then it's nice to have attention, quite simply…”
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