Un joli nom pour désigner quelque chose de vilain 1312

Fatimezohra1, 2 y.

- Science -

2 min read.

Un joli nom pour désigner quelque chose de vilain. En 1896 le professeur Antoine Marfan, un pédiatre français, spécialité toute jeune en ces temps, examinant un enfant âgé à peine de 5 ans, découvrait que le petit présentait des symptômes d’un syndrome alors méconnu. Il en fera la description avec les moyens et la connaissance de l’époque. Tout bonnement la communauté médicale allait alors lui donner le nom de Marfan, Ce fut alors le premier diagnostic officiel mis en évidence sur la maladie dite depuis Marfan. C’est quoi donc cette maladie qui parmi tant d’autres rend la vie difficile à certains humains et en menace la vie ? La cause exacte du syndrome de Marfan selon les scientifiques est la modification du gène qui dicte au corps comment fabriquer la fibrilline 1 et en quelle quantité. La fibrilline est une glycoprotéine essentielle à la formation des fibres élastiques présentes dans le tissu conjonctif. Elle est donc un constituant extrêmement important du tissu conjonctif. Ce dernier assure plusieurs fonctions dans l'organisme, notamment le soutien, la connexion entre les organes, l'emballage et la nutrition. Une personne est dite Marfan lorsqu'elle présente un trouble génétique caractérisé médicalement par la production insuffisante de la Fibrilline ou par la production altérée de celle-ci. Le porteur de ce disfonctionnement a un aspect physique souvent caractérisé par une taille grande et une corpulence plutôt mince, avec des doigts graciles et fuselés des bras et des jambes allongés et une déviation de la colonne vertébrale. Fort heureusement le Marfan est plutôt rare. Il ne touche qu’une personne sur 3000 voire sur 5000. Un Marfan a aussi tendance à souffrir de troubles oculaires et cardiaques. Il s’agit d’une mutation génétique qui va impacter beaucoup de fonctions et le « malade » devra ainsi la supporter tout au long de sa vie. A cet instant ci, il n’y a encore aucun traitement ni prévention possible. La transmission ne peut en être contrôlée ni l’apparition arrêtée ou traitée. Depuis que je suis déclarée Marfan, je mène un combat acharné et dur ; un combat existentiel pour survivre à ce mal pluridisciplinaire et évolutif. À chaque fois que je tombe, je lutte de toutes mes forces surtout mentales et je réussis à me relever de plus en plus forte. Je n’ai aucune gêne à révéler que je suis Marfan et dirait même, je suis fière d'être Marfan. Je suis vraiment particulière dans mon genre et c’est ainsi que je me vois au quotidien. Si le bon Dieu tout-puissant m'a conçue autrement et différemment des autres, c’est qu’il en a voulu ainsi et je l’accepte. Il m’a par ailleurs compensée me permettant de voir la vie sans doute différemment, avec optimisme et détermination, avec une force de caractère imperturbable et la volonté de rayonner autour de moi et à partir de cet article, sans doute aucun grâce à vous lecteurs, pour expliquer et banaliser cette maladie. J’essaie tous les jours de fédérer les porteurs de la maladie et leur explique que malgré tout, ils peuvent mener une vie normale et réaliser l’ensemble de leur rêve, peut-être pas devenir champion olympique mais par exemple avoir autant de puissance et peser sur l’histoire comme fut Abraham Lincoln président des Etats Unis d’Amérique qui portait la maladie ou encore comme Charles De Gaule, président emblématique libérateur de la France qui lui aussi était Marfan. Qui sait, parmi les enfants nés Marfan au Maroc, il y aurait un virtuose comme Paganini qui lui aussi était Marfan. Aujourd’hui par la grâce de Dieu nous sommes réunis dans une association que nous venons de créer, car ensemble les Marfan marocains seront plus forts, échangeront leurs expériences, s’encourageront mutuellement et lutteront collectivement contre toutes discriminations dont ils peuvent être l’objet. Avec l’avancement de la connaissance et l’accélération scientifique, grâce à la technologie de séquençage et autres, l’espoir est grand de voir arriver très vite un traitement pour guérir ou accompagner les personnes atteintes ou encore pour voir venir une technique génique pour transformer le court des choses et tordre la main à l’anomalie. Fatima Zohra

THE MEDITATIONS - Book I.[1/3] 2092

Bluwr X Commons: Marcus Aurelius, 2 y.

4 min read.

1. I learned from my grandfather, Verus, to use good manners, and to put restraint on anger. 2. In the famous memory of my father I had a pattern of modesty and manliness. 3. Of my mother I learned to be pious and generous; to keep myself not only from evil deeds, but even from evil thoughts; and to live with a simplicity which is far from customary among the rich. 4. I owe it to my great-grandfather that I did not attend public lectures and discussions, but had good and able teachers at home; and I owe him also the knowledge that for things of this nature a man should count no expense too great. 5. My tutor taught me not to favour either green or blue at the chariot races, nor, in the contests of gladiators, to be a supporter either of light or heavy armed. He taught me also to endure labour; not to need many things; to serve myself without troubling others; not to intermeddle in the affairs of others, and not easily to listen to slanders against them. 6. Of Diognetus I had the lesson not to busy myself about vain things; not to credit the great professions of such as pretend to work wonders, or of sorcerers about their charms, and their expelling of Demons and the like; not to keep quails (for fighting or divination), nor to run after such things; to suffer freedom of speech in others, and to apply myself heartily to philosophy. Him also I must thank for my hearing first Bacchius, then Tandasis and Marcianus; that I wrote dialogues in my youth, and took a liking to the philosopher’s pallet and skins, and to the other things which, by the Grecian discipline, belong to that profession. 7. To Rusticus I owe my first apprehensions that my nature needed reform and cure; and that I did not fall into the ambition of the common Sophists, either by composing speculative writings or by declaiming harangues of exhortation in public; further, that I never strove to be admired by ostentation of great patience in an ascetic life, or by display of activity and application; that I gave over the study of rhetoric, poetry, and the graces of language; and that I did not pace my house in my senatorial robes, or practise any similar affectation. I observed also the simplicity of style in his letters, particularly in that which he wrote to my mother from Sinuessa. I learned from him to be easily appeased, and to be readily reconciled with those who had displeased me or given cause of offence, so soon as they inclined to make their peace; to read with care; not to rest satisfied with a slight and superficial knowledge; nor quickly to assent to great talkers. I have him to thank that I met with the discourses of Epictetus, which he furnished me from his own library. 8. From Apollonius I learned true liberty, and tenacity of purpose; to regard nothing else, even in the smallest degree, but reason always; and always to remain unaltered in the agonies of pain, in the losses of children, or in long diseases. He afforded me a living example of how the same man can, upon occasion, be most yielding and most inflexible. He was patient in exposition; and, as might well be seen, esteemed his fine skill and ability in teaching others the principles of philosophy as the least of his endowments. It was from him that I learned how to receive from friends what are thought favours without seeming humbled by the giver or insensible to the gift. 9. Sextus was my pattern of a benign temper, and his family the model of a household governed by true paternal affection, and a steadfast purpose of living according to nature. Here I could learn to be grave without affectation, to observe sagaciously the several dispositions and inclinations of my friends, to tolerate the ignorant and those who follow current opinions without examination. His conversation showed how a man may accommodate himself to all men and to all companies; for though companionship with him was sweeter and more pleasing than any sort of flattery, yet he was at the same time highly respected and reverenced. No man was ever more happy than he in comprehending, finding out, and arranging in exact order the great maxims necessary for the conduct of life. His example taught me to suppress even the least appearance of anger or any other passion; but still, with all this perfect tranquillity, to possess the tenderest and most affectionate heart; to be apt to approve others yet without noise; to have much learning and little ostentation. 10. I learned from Alexander the Grammarian to avoid censuring others, to refrain from flouting them for a barbarism, solecism, or any false pronunciation. Rather was I dexterously to pronounce the words rightly in my answer, confining approval or objection to the matter itself, and avoiding discussion of the expression, or to use some other form of courteous suggestion. 11. Fronto made me sensible how much of envy, deceit and hypocrisy surrounds princes; and that generally those whom we account nobly born have somehow less natural affection. 12. I learned from Alexander the Platonist not often nor without great necessity to say, or write to any man in a letter, that I am not at leisure; nor thus, under pretext of urgent affairs, to make a practice of excusing myself from the duties which, according to our various ties, we owe to those with whom we live. 13. Of Catulus I learned not to condemn any friend’s expostulation even though it were unjust, but to try to recall him to his former disposition; to stint no praise in speaking of my masters, as is recounted of Domitius and Athenodorus; and to love my children with true affection. 14. Of Severus, my brother, I learned to love my kinsmen, to love truth, to love justice. Through him I came to know Thrasea, Helvidius, Cato, Dion, and Brutus. He gave me my first conception of a Commonwealth founded upon equitable laws and administered with equality of right; and of a Monarchy whose chief concern is the freedom of its subjects. Of him I learned likewise a constant and harmonious devotion to Philosophy; to be ready to do good, to be generous with all my heart. He taught me to be of good hope and trustful of the affection of my friends. I observed in him candour in declaring what he condemned in the conduct of others; and so frank and open was his behaviour, that his friends might easily see without the trouble of conjecture what he liked or disliked.