Rare diseases are not as rare as they seem... 7762

Aziz Daouda, 5 mon.

- Politics - Science - Society -

3.6 min read.

On Saturday february 22, I had the privilege of attending the 6th Rare Disease Day. Dr Khadija Moussayer, President of the Moroccan Rare Diseases Alliance, did me the honour, and I thank her for allowing me to sit at the table with the great medical professors who were going to discuss cutting-edge medical issues, requiring expertise and mastery of various subjects, as well as a deep humanism and a certain love of the country and its people. Unfortunately, I was only able to attend half of the proceedings, for which I am very sorry. So-called rare diseases are not in fact all that rare. They may be rare in terms of numbers, but they are so common that they are a daily occurrence in medical circles. They are rare because they are often invisible in a social environment that does not yet understand them or does not understand them well enough. They have a heavy impact on the emotional, sociological and economic life of families and enormously on the lives of the people affected. They are not yet adequately treated in university curricula, and are poorly understood by general practitioners and even by many paediatricians. Increasingly easy access to medical treatment is bringing these conditions out into the open, revealing their complexity and diversity to the medical community itself, as well as to families and society at large. They have an enormous psychological impact on families, disorientating them, tearing them apart and impoverishing them. Because of their genetic nature, they leave the families and individuals concerned in doubt, and plunge them into anxiety, disgust and self-hatred. Negative emotional reasoning and feelings of responsibility are never far away. This is often the driving force behind heavy social prejudice. Tradition and lack of education do the rest. They can go so far as to break up a family and often make the woman responsible. I myself met a young woman who was repudiated and rejected simply because she had given birth to a Marfan child. Her husband and family blamed her for the problematic birth and put her out on the street. Today, she is bringing up her child alone and is fighting to feed him, look after him, educate him and have his difference understood and accepted at school. Rare diseases are even more problematic, when you consider that doctors don't come across them every day in their consultations, and can even go so far as to ignore their existence. Their diagnoses are so complex at times that they require the intervention of multiple highly qualified specialities to define their existence and the protocols to be followed. More than in any other situation, the person diagnosed needs to be followed by more than one specialist at the same time. Is this always the case? Special tribute must be paid here to Professors Asmaa Quessar and Amine Benmoussa, who addressed the issue from the haematological point of view, explaining the complexity of the manifestations of some of these diseases and the impact of certain treatments. Professor FZ El Fatoiki focused in particular on skin manifestations, which in fact hide many things inside and are therefore crucial to diagnosis. Professor Imane Chahid received a special mention for her presentation on type 1 neurofibromatosis, which goes beyond café au lait spots. She recommended the creation of working groups involving all the specialities concerned, in order to limit patients' medical wandering and save time, efficiency and money. We need to explain to mothers that café au lait spots on a baby's skin are not ‘touhimates’. This ignorance can delay the treatment of a child with the disease, with all the consequences that can entail. That's true. One of the problems faced by families is medical wandering. Patients can spend a long time consulting and treating symptoms - ophthalmological, gastric, dermatological, etc. - before being diagnosed with a rare disease. Wandering is extremely costly. The testimony of a father who lost two children was particularly poignant. It was an emotional moment. The dignity and courage he showed make him an admirable character. I was reassured by the youth and commitment of more than one of the speakers. The sheer number and quality of people in attendance, and the questions asked by professionals and parents, show that there is a growing interest and expertise. The clarifications and commitment expressed on behalf of Moroccan geneticists by Prof. Karim Ouldim augur better days ahead, and a probably innovative approach to rapid and early diagnosis, and hence to treatment. In a way, he was responding to Prof. Chahid's call to work in clusters. Taking an interest in genetics brings us back to the question of data and the power of our computers. When it comes to genetics, AI is going to play a vital role, and if Morocco is not to suffer from the biases of others, it must compile and process its own data and train machines capable of understanding the specific genetic characteristics of Moroccans, because there are some, and that's normal. Any delay in this area will result in a lack of control, a squandering of skills, waste and a failure to respond effectively to the real needs of citizens. A fundamental question hovered over the room just before the lunch break: why is it that the work carried out by eminent Moroccans, the results of research carried out in the country and other discoveries are not taken into account in the establishment of public health policies? The gap between Moroccan research and the spheres of political decision-making is simply abnormal. A country can only progress from within through scientific research and hard work. Public policy must be based on innovation and research in the Moroccan field. Benchmarking is good, but research at national level is even better. I had the impression, and I was not the only one, that politicians go so far as to ignore, not to say despise, national skills, preferring to put their trust in foreign consultancies that are often ill-advised and ignorant of Moroccan realities and particularities. This is one of the reasons why our health and other systems are being hampered and impacted. It's unfortunate to be asking such questions in 2025. The day was an immeasurable success and deserves a great deal of media coverage, because the aim was to raise awareness. Lalla Khadija Moussayer and her team succeeded. We can never thank them enough for that. Thank you also for giving me the opportunity to meet Professor Mohammed Itri, an eminent paediatrician who left Rabat to teach at the CHU Ibn Rochd, but who never forgot his neighbourhood and his childhood neighbours...

Aziz Daouda

Directeur Technique et du Développement de la Confédération Africaine d'Athlétisme. Passionné du Maroc, passionné d'Afrique. Concerné par ce qui se passe, formulant mon point de vue quand j'en ai un. Humaniste, j'essaye de l'être, humain je veux l'être. Mon histoire est intimement liée à l'athlétisme marocain et mondial. J'ai eu le privilège de participer à la gloire de mon pays .

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THE MEDITATIONS - Book I.[1/3] 2201

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.