Élodie Gomes, suffering from a genetic disease and dependent on blood donations to live normally, has been trying for years to raise awareness about her disease and the importance of donation, on her scale. Portrait.
Under a greyish and rainy sky, in the 20th arrondissement of Paris, sitting on a bench in a square, Élodie Gomes waits, wrapped up in her black down jacket. She has just had a blood test at Tenon Hospital. The 29-year-old, with jet-black hair, waves a smile, and walks briskly forward. ” It doesn’t matter about the rain, it’s not raining too much “, considers Élodie Gomes, shrugging her shoulders, before sitting down again. The next day, and like every four weeks for more than 17 years, she will return to Tenon for a transfusion exchange.
Élodie Gomes has sickle cell disease (“ depra’ as she calls it), the first genetic disease in France, which affects the shape of red blood cells. ” I inherited it from my mother, originally from Algeria, and from my father, originally from Cape Verde, my brother has it too, a slightly less intense form. It’s a very complicated disease to live with because it’s an invisible handicap. “, she explains at full speed.
Symptoms vary from one person to another, at different scales of intensity. Cramps, anemia, fatigue, pain in the arms, legs, knees, chest… Excessive cold, sudden heat, and a vaso-occlusive crisis (VOC) can be triggered. Élodie popularizes the phenomenon in one sentence: “ For us, our red blood cell is moon-shaped instead of round, a CVO is when it passes through the vessels and it gets blocked, it causes hyper painful attacks. Hence the importance for her of renewing her blood regularly, to reduce the risk of a crisis.
Verbal misunderstandings and abuse
As soon as he was born in Longjumeau, 20 km south of Paris, his disease was diagnosed, unlike other carriers who do not even know that they are living with the ” depra’ “. The young girl is therefore followed quickly, but her thinness, her regular absences for exams and her withdrawal from sports lead to the mockery of some of her comrades, because sickle cell disease is not visible. But no question for Élodie to feel sorry for her fate. ” It’s true that being smaller wasn’t easy, but it clicked when I started going to college, working, when I became a young adult and managed to shoot my disease in force. I was very shy, very complexed, whereas now it doesn’t affect me anymore. »
After two attempts in faculty in licenses which do not please her, Élodie Gomes is heading towards the professional path. ” I worked as a saleswoman, as a ticketing hostess at Disney, and today, I am a hostess in a company. In parallel with her work, she multiplies awareness raising to publicize her disease on social networks, at the risk, sometimes, of finding herself confronted with verbal violence. Wearily, she says: Some send me messages saying “sickle cell disease is a black disease” If it’s someone not too narrow-minded or closed, I’ll try to discuss : “I have a friend affected too, Anissa, and she is Algerian. She is not black, there are Greek people, North Africans…” If I see that people are too stubborn, I say “Stay on your opinion”, it does not matter. »
Networks to show the disease
The young woman is used to criticism on the networks. She manages two Instagram accounts, the first devoted to knowledge of the disease, “@Drepasmile”, with her friend Anissa, and the other, “@tlodiie” on her daily life with or without the disease. “Qwhen I go to the hospital for example, there I made my story, “Ah I did my blood test for tomorrow, for my transfusion” and it’s a bit of showing on a daily basis that even if you’re sick, you can have a normal life, have fun and live. »
Necessarily, there are always some criticisms inherent in social networks, but as a rule, the feedback is positive. On her personal Instagram, she multiplies the photos of sports practice, travel. ” Basic, diving, skiing, it is not recommended. But anything I can test, I test. For the “drepas”, it’s more complicated, but it’s always possible, within reason “, she nuances.
Because despite the disease which weakens her enormously, Élodie has taken a passion for sport. A kind of revenge after a childhood overprotected by caregivers. ” Doctors often said “You must do be careful at the pool because with the temperature changes you will have seizures.” There was a big fear around the sport. Growing up, I wanted to remove my fragile, weak girl complex. She sets herself goals, running ten kilometers, obstacle courses… she doesn’t intend to become a marathon runner, but it’s a way of fighting. ” At the beginning, it was complicated because it shocked my body, I was knocked out, super tired, I saw the people nearby at full speed, it hurt my ego, before telling myself that it was normal, that I had a sickness. I learned to tame my body and know my limits. »
Even if she is well aware that not all “drepas” can do it, she tries to encourage those who follow her to try gently, sometimes with good surprises: some realize that they can gradually resume a practice athletic.
Raising awareness about blood donation
All this intense life, as it should be for everyone, Élodie owes it to blood donation, she is well aware of that. Thanks to the donations, she can have a transfusion exchange every four weeks, and her crises become less intense, less regular. Hence her investment in promoting it, which she would like to do full-time in the future. ” We can never repeat it enough, but donate your blood and talk about it to the people around you, there are no small donations, all blood serves, really ! “, she insists.
Especially since with the pandemic, French Blood Establishment (EFS) has done fewer campaigns, especially in companies, and is struggling to find donors. The sportswoman therefore talks about it everywhere around her, sometimes with good surprises. ” I have a friend who started donating blood because I told her about it and it touched me too much that she got involved in the cause and said to herself “well, I’m going to donate my blood or even my platelets, my plasma…“ »
Politically, she would like the State to invest even more in the support of genetic diseases, blood donation and awareness. On March 16, 2022, homosexuals will finally be able to donate blood. A relief for Élodie Gomes: “ Sometimes I eat small cleats in mode “I would like to do it, but they don’t accept people under 50 kilos” or precisely“they don’t want to because I’m LGBTQ+”. So that they open to homosexuals, I think that’s good, you have to open to as many people as possible. We need to be more kind and open-minded. »
To encourage donation, the young woman received via his networks very interesting ideas, one of which he particularly likes: developing an application that allows donors to know anonymously that their donation has been used, ” so that they see how useful their gesture is. »
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