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XERODERMA PIGMENTOSUM : la maladie des enfants de la lune 1176

Dr Moussayer khadija, 1 y.
4 min read.
Les enfants de la lune sont atteints d'une maladie héréditaire, le xeroderma pigmentosum (XP), qui provoque une hypersensibilité aux rayonnements ultraviolets. En l'absence de protection totale face au soleil, ils sont exposés à des cancers cutanés et des dommages oculaires graves qui nécessitent de nombreuses opérations chirurgicales. DES CONDITIONS DE VIE « IMPOSSIBLES » Les malades ne peuvent se déplacer sans danger que la nuit, un rythme qui bouleverse la vie des familles concernées Il n’existe actuellement aucun traitement curatif et les mesures de protection sont contraignantes et coûteuses. Il faut ainsi compter près de 1 800 dhirams par mois pour l’achat des crèmes solaires et d’écran total, sachant que la consommation d’un tube d’écran par jour s’impose. Le port d'équipements protecteurs s’impose également: chapeau, masque ou lunettes anti-UV, gants et vêtements spéciaux… Un masque de protection ventilé pour le visage coûte à lui tout seul environ 1 700 dirhams). Les familles doivent équiper les lieux de vie et de déplacement (maison, voiture…) de vitres, de lumières anti-UV (des ampoules LED qui ne diffusent pas d’UV)… UNE PATHOLOGIE HEREDITAIRE Le xeroderma pigmentosum (XP) est une pathologie génétique héréditaire, caractérisée par une sensibilité extrême aux rayonnements ultraviolets présents dans la lumière du soleil et dans certaines sources lumineuses artificielles. Ce nom scientifique signifie en latin : derme sec et pigmenté : la peau est sèche et épaisse avec des anomalies variées de la pigmentation. La sévérité des atteintes et l'âge d'apparition varient considérablement et dépendent en partie de l'exposition solaire. LES MANIFESTATIONS Classiquement, elle se déclare par l’apparition dès les premiers mois d’érythèmes , de taches de rousseur et de dégradations graves de la peau. Ces atteintes déclenchent des lésions cutanées souvent cancéreuses (dès l’âge de 2 ans) et oculaires (à 4 ans) à la moindre exposition au soleil. Ce risque de cancer est ainsi 4.000 fois plus élevé que dans la population générale. La pathologie peut s'accompagner également de troubles neurologiques : pertes de l'audition, microcéphalie, troubles du développement et réflexes tendineux diminués ou absents… et cela dans 20 à 30 % des cas. Il existe aussi une forme atténuée mais sévère tout de même de la maladie, le XP variant. Présente chez un quart des malades environ, elle se traduit par l’apparition des premiers signes plus tardivement, entre 15 et 40 ans, et par une progression plus lente. ORIGINE Les rayonnements du soleil induisent régulièrement des mutations génétiques dans la structure de l’ADN de nos cellules. Ces altérations se réparent facilement chez un individu sain, à raison de milliers de fois par jour. Les enfants de la lune sont par contre dépourvus de cette capacité de réparation, d’où une accumulation de mutations dans les cellules de la peau et des yeux. Des protéines anormales sont produites et des cellules tumorales apparaissent. Par ailleurs, la maladie, touchant les deux sexes, est récessive : les deux parents sont porteurs du gène déficient mais n’ont pas développé la maladie, les enfants malades ont reçu les deux gènes mutés des parents. DIAGNOSTIC La maladie est diagnostiquée assez tôt, des brûlures apparaissant dès les premières expositions au soleil. Le diagnostic doit se faire dès la petite enfance . Pour le confirmer, on pratique une biopsie en prélevant des cellules appelées fibroblastes situées dans le derme (couche profonde de la peau, recouverte par l'épiderme) LA FREQUENCE DE LA MALADIE On estime que le XP toucherait environ 1 personne sur un million aux Etats-Unis et en Europe. Elle est beaucoup plus élevée au Japon et surtout au Pakistan et en Afrique du Nord (au moins 1 sur 100 000). Cette forte fréquence est due à la forte consanguinité des populations, de par la tradition des mariages intrafamiliaux (entre cousins) qui perdure. Ainsi dans les pays arabes (et selon une étude du département de génétique médicale de l’Institut national d’hygiène marocain publiée en 2017), ce taux de consanguinité est de 15,25% au Maroc. Bien d’autres pays arabes dépassent ce taux : Algérie (22 à 25%), Liban (25%) ou encore Arabie Saoudite (51,3%) En France, on recense, selon l'association française des enfants de la lune, 91 cas en France (chiffre 2017), la plupart étant d’origine maghrébine. PREVENTION Pour lutter contre ce mal, le traitement repose essentiellement sur la photoprotection : aucune parcelle de la peau ne doit être exposée à la lumière du jour. L’enfant devra vivre dans un environnement protégé contre tout UV, et cela grâce à un dosimètre, dont sont souvent dépourvus les familles au Maroc Un enfant non protégé efficacement (comme c’est le cas pour beaucoup au Maroc, au Maghreb ou dans le reste de l’Afrique) ne survit pas en général au-delà de l’âge de dix ans. En cas de protection, il peut espérer vivre jusqu’à 20 ans et même un peu plus. TRAITEMENT DES CANCERS L'ablation chirurgicale des tumeurs est la règle. On réalise aussi des greffes de peau prélevée sur le malade lui-même pour favoriser la cicatrisation. Les autres traitements du cancer (chimiothérapie et radiothérapie) peuvent s’imposer quand la tumeur est difficile à opérer. LA RECHERCHE PROGRESSE L’espoir réside dans la thérapie génique : le remplacement du gène malade par un gène sain. C’est une technique dont la mise au point demande de nombreux efforts car il s’agit de pouvoir reproduire des cellules de peau, les modifier génétiquement et les greffer sur les malades sans qu'il y ait de rejet. Une équipe de l'Inserm a fait cependant un pas important dans un autre domaine : elle a mis au point une crème sur des souris porteuses de la maladie, dont les premiers résultats sont encourageants. Cette crème ne remplacerait pas la photoprotection toujours aussi indispensable mais elle contient une molécule, fonctionnant sur le principe de la thérapie génique, qui aide à la réparation de l’ADN. UN CONCERT CARITATIF EN 2019 Les enfants de la lune ont été mis à l’honneur au Maroc en avril 2019 grâce à l’initiative d’un club de passionnés de la Moto, les « skulls of Sahara Mc », qui ont organisé un grand concert de solidarité pendant trois jours, avec le soutien de l’Alliance des Maladies Rares au Maroc (AMRM). Enfin, on ne peut en terminer sans évoquer l’icône de la maladie au Maroc, Fatima Zahra El Ghazaoui. Elle est décédée en 2023, à l’âge de 31 ans. Nous n'oublierons jamais son optimisme inébranlable, sa joie de vivre malgré ses souffrances, et son engagement pour la cause de tous les enfants de la lune. Son père est président de l'Association de Solidarité avec les Enfants de la Lune au Maroc (A.S.E.L.M.) et membre du bureau de l’Alliance des Maladies Rares au Maroc Dr MOUSSAYER KHADIJA الدكتورة خديجة BIBLIOGRAPHIE Xeroderma pigmentosum https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=FR&Expert=910 ENFANTS DE LA LUNE – l’association https://www.enfantsdelalune.org/
Dr Moussayer khadija

Dr Moussayer khadija

Dr MOUSSAYER KHADIJA الدكتورة خديجة موسيار Spécialiste en médecine interne et en Gériatrie en libéral à Casablanca. Présidente de l’Alliance Maladies Rares Maroc (AMRM) et de l’association marocaine des maladies auto-immunes et systémiques (AMMAIS), Vice-présidente du Groupe de l’Auto-Immunité Marocain (GEAIM)


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Closing a Year, Opening Paths ... 117

Fatima Zahra Sahli, 13 h.
Some endings mean more than just the conclusion of an academic calendar. The final session with my Royal Army students young women I’ve guided through two intense years will remain etched in my memory as a suspended moment, full of emotion, meaningful silences, and eyes that said everything. They are now being deployed across the Kingdom. Some will find themselves in remote units, far from one another, but I know that an invisible, unbreakable bond will continue to connect us. These two years weren’t easy. The demands of military training, the discipline of the institution, the academic expectations... But through it all, I made a point of keeping something alive; their humanity. Alongside knowledge, structure, and rigor, I wanted them to preserve and protect their capacity for empathy, presence, and sensitivity. On the last day, they briefly broke with military protocol. In the middle of their march, they stopped. A rare gesture. Almost forbidden. But deeply sincere. They wanted to say goodbye. To show me, in their own way, that something had mattered in our shared journey. I know they wanted to hug me. And even though they didn’t, I am certain they will now know how to offer those “hugs” differently through kind words, quiet support, and a respectful gaze to anyone in need. As I left the center, I realized something essential; to teach is often to plant a seed in soil we may never see again. But we do it with the faith that it will grow. See you next year with new students, new souls to guide.

“Sport for All”: A Shared Space for Humanity 117

Fatima Zahra Sahli, 13 h.
1 min read.
During the training I recently led for sports coordinators and facilitators, my goal wasn’t simply to transfer knowledge. I aimed for something deeper: to inspire. To encourage these men and women to wear different hats not just as instructors, but as educators, mediators, trusted figures… and most of all, as conveyors of meaning. The concept of “sport for all” goes far beyond facilities and access. It is, first and foremost, a human project. At its core lie two essential foundations: - self-acceptance, - acceptance of others. From this dual acceptance arises the possibility of truly inclusive spaces, where everyone feels legitimate to participate, to grow, and to belong. Throughout the training, I saw something rare in the eyes of the participants; a genuine interest, a hunger for understanding. They weren’t just passively absorbing models, tools, or theories. They wanted to go deeper. They wanted each concept to connect with the complex human realities they encounter every day in their communities and sport programs. This experience reminded me once again that sport reflects the human condition. It can exclude or unite. It can reinforce inequality or break it down. It can become a space of judgment or a space for healing and resilience. The individuals we train today will shape what "sport for all" becomes tomorrow. To capture the spirit of this training, I’m sharing below a short recap video that reflects both the energy and the shared humanity we experienced.
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Le ciel et la lune 277

Boucharfou, 2 d.
1 min read.
SOUVENT JE SCRUTE LE CIEL ET CE DEPUIS MON JEUNE AGE JE CONTEMPLE LA LUNE JE VOIS SI ELLE SEMI OU PLEINE JE COMPTE LES ÉTOILES JE CHERCHE CELLE DU NORD JE DEVINE MARS JE CHERCHE JUPITER JE SURVEILLE LES ÉTOILES FILANTES JE RECHERCHE LES OVNIS ET AUTRES EXTRA TERRESTRES JE REFAIS LE COMPTE DES ÉTOILES JE RECHERCHE D'AUTRES LUNES JE PASSE DES HEURES COMME CA A COMPTER ET RECOMPTER A VÉRIFIER LE NOMBRE D’ÉTOILES ET FINALEMENT JE REPLONGE DANS LA RÉALITÉ ET LE QUOTIDIEN LE TRAIN TRAIN ET QUAND LA NUIT REVIENDRA JE REGARDE MON CIEL DE NOUVEAU JE COMPTE ET RECOMPTE LES ÉTOILES JE SCRUTE LA LUNE JE LA DÉVISAGE JE LA REGARDE EN FACE BIEN EN FACE ELLE ROUGIT JE ROUGIS ELLE S’ÉCLIPSE JE SUIS SES TRACES ELLE SE COUCHE JE LA LAISSE ROUPILLER JE ME LÈVE ALORS ET JE SCRUTE LE CIEL BLEU JE DÉTESTE LE SOLEIL QUI ÉBLOUIE JE METS DES LUNETTES POINT D’ÉTOILES POINT DE LUNE SOUDAIN LE SOLEIL EST CHASSE SES RAYONS AUSSI SON ÉBLOUISSEMENT DISPARAIT ET LA LUNE SE LÈVE ET SE RELÈVE MAJESTUEUSE COMME D'HABITUDE ET EN DOUCEUR ELLE ENVOIE SES DOUX RAYONS POINT D’ÉBLOUISSEMENT ET SOUS SON CLAIR VOYONS LE CLAIR DE LUNE JE SCRUTE LE CIEL A LA RECHERCHE DE JUPITER MARS ET AUTRE NEPTUNE SANS LASSITUDE NI AMERTUME JE LA DÉVISAGE ENCORE ET ENCORE SANS REPIS JE LA FIXE ELLE ROUGIT JE ROUGIS JE COMPTE LES ÉTOILES JE COMPTE ET RECOMPTE ET JE VOIS SI LE COMPTE Y EST LA LUNE SE CACHE SOUS UN VOILE ENFIN UN NUAGE MAIS ELLE NE TARDE PAS A REPARAITRE POUR SE CACHER DE NOUVEAU JE LA FIXE ET REFIXE AVEC MON REGARD PATHÉTIQUE ELLE ROUGIT ET VIRE AU JAUNE SA COULEUR MAGNIFIQUE ET TOUTES LES AUTRES ÉTOILES EN FONT DE MÊME Dr Bouchareb Fouad Tous les droits sont protégés

John Bolton and His Controversial Op-Ed Against Morocco: Hostility with Troubled Roots... 645

Aziz Daouda, 5 d.
John Bolton, former U.S. National Security Advisor under Donald Trump, has just published an op-ed in the Washington Times, notably favorable to the Polisario thesis and thus to the Algerian position. The text recycles arguments Bolton has already put forward in the past. He notably defends the outdated idea of a self-determination referendum and accuses Morocco of obstructing the implementation of UN resolutions. It should be recalled once again that the referendum proposal, which Morocco had put forward in Nairobi, has been obsolete and abandoned by the Security Council since 2007; as for accusing Morocco of hindering the process, this is simply false in light of the UN resolutions over the past 20 years. Bolton lies, and he knows it. He is accustomed to it. How can one not think that this is clearly an attempt by this forgotten figure of history to regain relevance, a will to manipulate public opinion, but above all an intention to harm by pleasing the enemies of the Kingdom. This position strangely fits, without surprising, into the continuity of the official rhetoric of the Algerian military junta, the main supporter of the Polisario. It is a blatant alignment and rapprochement that raises questions about Bolton’s integrity. Let us just recall that Bolton was abruptly dismissed by Donald Trump in 2019, officially for strategic disagreements, but according to some observers, also due to questionable connections. Regarding the matter concerning the Kingdom, Bolton regularly frequents Algiers and collaborates with well-paid Algerian lobbyists such as David Keene, former NRA president, engaged in defending the Algerian cause in the United States. This closeness fuels suspicions of a relay role for Algerian interests, aiming to influence American policy. Nothing to be proud of for the jubilant military junta. It is used to contradiction and blunt communication turning the slightest detail into a victory. Bolton no longer counts and has no impact. In his rhetoric, Algiers pretends to ignore that the same Bolton supports the use of force against Iran, Algeria’s strategic ally. Iran, which the Algerian president will soon visit... It is also this same Bolton who pushed for the transfer of the U.S. embassy from Tel Aviv to Jerusalem... A strange supporter of the Palestinians to take one of their enemies as a reference. Bolton’s article fits into a morbid continuity. He shamelessly and unashamedly tries to discredit Moroccan policy and its growing influence on the international stage while defending separatism. He ignores the terrorist nature of the Polisario, opposing an entire faction of Republicans with Joe Wilson as spokesperson. The latter is logically pushing for a vote very soon in the U.S. Congress on a law designating the Polisario as a terrorist organization. Paradoxically, Bolton’s desperate offensive comes at a time when Morocco is achieving major diplomatic successes. The Kingdom has recently further strengthened its ties with several African countries, Kenya being the latest example. Thanks to its autonomy plan for the Sahara, widely recognized and supported by the international community, Morocco is reaping success after success. The vote on the latest Security Council resolution on the issue shows that even countries that once voted out of ideological principle against anything favorable to Morocco no longer do so, quite the opposite. Moreover, the closure of the Polisario Front’s office in Damascus illustrates Morocco’s growing influence in the Middle East. Thus, unanimity is almost reached in favor of Morocco at the Arab League today, with the obvious exception of Algeria alone, perfectly isolated, even neutralized and weakened in everyone’s eyes. At heart, Bolton’s op-ed seems intended to soothe the wounds of Algiers and the separatists, who are losing ground to Morocco’s assertion. The autonomy plan proposed by Rabat is increasingly endorsed on the international stage, while the Polisario sees its influence diminish. It is becoming inaudible and has no other escape than to cling to a few fringe extremist demonstrations here and there. This stance therefore appears as a last gasp from a retreating camp. Lacking any real leverage to influence American or global policy, Algiers and the separatists quench their thirst by drinking the words of marginal figures without substance. To better understand this posture, it must be recalled that John Bolton is a controversial figure in American politics, known for his ultra-conservative positions and aggressive foreign policy approach, often described as neoconservative. His dismissal in 2019 was marked by major disagreements with the Trump administration, but also by suspicions of dubious connections with certain foreign circles. Bolton is suspected of involvement in several controversial international operations, including organizing coups d’état, reinforcing the image of a man with brutal methods and strongly marked convictions. In sum, John Bolton’s recent op-ed in the Washington Times illustrates a persistent hostility towards the Kingdom by a fading figure; a pontiff driven by an outdated political vision. The signatory’s stance is disconnected from current geopolitical developments. It once again shows that Algiers, through its parrot media, is ready to cling to any nonsense, provided it fits its outdated narrative. Above all, it highlights the irreversible decline of the Polisario and Morocco’s growing success on the international stage.

Kenya Inaugurates Its Embassy in Rabat: A Major Diplomatic Turning Point Favoring Morocco on Western Sahara 649

Aziz Daouda, 5 d.
The official inauguration of Kenya’s embassy in Rabat, conducted by Moroccan Foreign Minister Nasser Bourita and Kenyan Foreign Minister Musalia Mudavadi, marks a historic milestone in bilateral relations between the two countries. This ceremony, coinciding with the 60th anniversary of diplomatic ties between Kenya in East Africa and Morocco in the far west of the continent, symbolizes a significant strengthening of political, economic, and cultural exchanges in pursuit of continental continuity. Most importantly, it signifies Kenya’s strategic repositioning on the sensitive issue of the Moroccan Sahara. For the first time, Kenya has opened an embassy in Morocco, demonstrating Nairobi’s firm commitment to consolidating its relations with Rabat. Even more crucially, Kenya has officially recognized Morocco’s Autonomy Plan as “the only sustainable approach” to resolving the Western Sahara dispute. This represents a radical shift in Kenyan policy, as until recently, Kenya maintained relations with the self-proclaimed Sahrawi Arab Democratic Republic (SADR), supported by Algeria, which is increasingly losing ground internationally. Under President William Ruto’s leadership, this diplomatic shift began taking shape in March 2024 with the appointment of Jessica Muthoni Gakinya as Kenya’s first ambassador to Morocco. Since then, several memorandums of understanding have been signed covering key areas such as housing, urban development, youth, trade, and diplomatic training, significantly strengthening cooperation between the two nations. Kenya’s repositioning on the Sahara issue aligns with a broader global trend of growing support for Morocco’s stance, while the Polisario Front loses international recognition. Over fifty countries have withdrawn recognition of the SADR since the Cold War’s end, and no African country has recognized it since 2011. Recent developments include Syria’s official closure of the Polisario office in Damascus, signaling a strategic distancing from the Algerian-Iranian axis and a clear rejection of support for Sahrawi separatists. This is a major setback for Algeria on the Arab world stage. In Latin America, key countries such as Bolivia, Ecuador, and Panama have also withdrawn recognition of the SADR, adopting neutral or pro-Moroccan sovereignty positions consistent with UN resolutions. This shift is notable given the region’s past role as a haven for separatist propaganda. In Europe, nearly all countries, including France, Spain, Germany, and many EU members, now explicitly support Morocco’s Autonomy Plan as a serious basis for a lasting political solution. Algeria, increasingly powerless, is losing influence and reputation worldwide due to its persistent backing of the Polisario. Despite this international momentum favoring Morocco, Algeria continues to support the Polisario, exemplified by President Abdelmadjid Tebboune’s recent reception of the “new Sahrawi ambassador” Khatri Adouh. While Bourita and Mudavadi forged strong friendship ties, the Algerian-hosted ambassador boasted of supposed “diplomatic victories” for the separatists, ignoring Polisario’s growing isolation. Algeria and its proxy even disregard UN Security Council Resolution 2756 adopted in October 2024, which explicitly recognizes Algeria as a party to the dispute and calls for respect of the ceasefire and a durable political solution, endorsing Morocco’s initiative led by King Mohammed VI. Morocco is capitalizing on this favorable context by multiplying bilateral agreements, notably with strategic African countries like Kenya. The signing of five memorandums of understanding during Mudavadi’s visit reflects a shared vision of enhanced cooperation based on historical, cultural, and economic ties. Africa is thus showing a new face marked by pragmatism and mutual interests. The opening of the Kenyan embassy in Rabat and Nairobi’s official support for Morocco’s territorial integrity represent a major diplomatic victory for the Kingdom. Algeria can no longer ignore this development without risking even greater isolation on the continent and globally. Adding to Algeria’s woes, Ivory Coast recently reiterated its position sidelining the separatist movement and its sponsor. Morocco is consolidating its diplomatic leadership and advancing toward a peaceful and lasting resolution of the artificial Western Sahara conflict. In contrast, the Polisario is increasingly isolated, supported only by a stubborn Algeria and perhaps, for now, South Africa, whose economy and business ties with Morocco are growing. The international community is converging toward greater recognition of Moroccan sovereignty and its Autonomy Plan, supported by two permanent UN Security Council members and many regional economic powers. This irreversible momentum heralds a new era in African diplomacy, with the African Union likely to expel the SADR in the near future, removing a burdensome member that meets no criteria for international organization membership except Algeria’s excessive sponsorship, itself in notable decline. Omar Hilal, Morocco’s representative to the UN, does not hesitate to remind his Algerian counterparts of this anachronistic and untenable situation at every opportunity, making the international community a witness to this increasingly ridiculous stalemate that cannot last.