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dyskinésie paroxystique, qui entraîne une perte de contrôle de plusieurs parties de son corps.</p> <p class="author"> Par Kévin Comby pour Le Point</p> <time>Publié le 27/10/2024 à 14h15</time> </header>   <div id="article-body" class="" >    <img src="/img-l/articles/2573791.png" width="0" height="0" style="position:absolute !important; top:-50000px !important;" />  <figure id="video"><blockquote class="video-dailymotion-unloaded" data-playerid="x2qwq" data-videoid="x984le0" data-ads-params="rubrique%3DSante%26statut_article%3Dgratuit%26thematique%3DSante%26motcle%3DSant%C3%A9%26position%3Dhaut"></blockquote> </figure> <div id="actions"> <p class="reading-time">Temps de lecture : <span>2 min</span></p> <ul> <li class="add-fav neverstop" data-gtm="click:action"> <a href="https://moncompte.lepoint.fr/connexion/?return" data-dmp="'clic','Barre_articles','Partage_Archiver'" data-title="Qu’est-ce que la dyskinésie paroxystique, maladie rare dont Miss France 2024 a confié souffrir ?" 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class="etx-player" data-listen-text-font="Fira Sans" data-play-btn-align="-8px" data-play-btn-icon="straight-full" data-play-btn-radius="10px" data-main-color="#666" data-play-btn-color="#FFF" data-listen-text-color="#666" data-time-color="#666" data-credit-text-color="#666" data-track-bg-color="#f9f9f92b" data-link-disabled="true" data-duration="144.6" data-url="https://lecture-audio.lpnt.fr/6b223610-6859-5fd0-a767-e82385489509.mp3"></div> </div>   <div id="contenu" class="article-styles">   <p><span class="dflt-txt__lettrine">È</span>ve Gilles, actuelle <a class="Link" href="https://www.lepoint.fr/people/qui-sont-les-candidates-en-lice-pour-miss-france-2025--21-10-2024-2573257_2116.php" title="" data-gtm="click:capsule" data-capsule="Lien">Miss France, qui remettra dans quelques semaines son titre en lice</a>, a révélé, dans une interview au média <a class="Link" href="https://www.youtube.com/watch?v=wbWrMARgq5I" target="_blank" title="" data-gtm="click:capsule" data-capsule="Lien">Konbini</a>, souffrir d'une maladie neurologique rare. La jeune femme de 21 ans a expliqué souffrir de dyskinésie paroxystique depuis l'enfance. Cette maladie invisible, qui touche entre une personne sur 150 000 et une personne sur un million, se caractérise par une perte de contrôle durant un laps de temps plus ou moins court des bras, des jambes et du visage. « Ça peut être un bras qui part vers l'intérieur, ça peut être tout mon corps. Ça peut même être au niveau de mon visage […] Ce sont des mouvements que je ne contrôle pas pendant un certain temps, entre 25 et 40 secondes », a-t-elle détaillé.</p><section class="mbl txtcenter"><div id="IN_CONTENT" class="txtcenter mbs slotpub"></div></section><div id="newsletter" class="bloc-1 title-top"> <span class="h2">La newsletter santé</span> <div class="step-1"> <p class="period">Tous les mardis à 9h30</p> <p>Recevez notre sélection d’articles issue de notre rubrique Santé ainsi que les Palmarès des hôpitaux et cliniques, dossiers spéciaux, conseils et astuces…</p> <form action="#" method="get"> <input type="hidden" name="origine" value="KAM-Page-article-sante_bloc-collecte_nlsante"> <input type="hidden" name="nl" value="nlsante"> <div> <label for="mail">Votre adresse email</label> <input type="text" name="mail" id="email" placeholder="Votre adresse email" class="text"> <p class="msg-invalid wrong-email">Votre adresse email n'est pas valide</p> <p class="msg-invalid empty-email">Veuillez renseigner votre adresse email</p> </div> <input type="submit" value="S'inscrire" class="btn"> </form> </div> <div class="step-2"> <p>Merci !<br>Votre inscription a bien été prise en compte avec l'adresse email :<br><span class="email-sended"></span></p> <p>Pour découvrir toutes nos autres newsletters, rendez-vous ici : <a href="https://moncompte.lepoint.fr/" title="">MonCompte</a></p> </div> <p>En vous inscrivant, vous acceptez les <a href="https://www.lepoint.fr/html/cgu/" title="Conditions générales d'utilisation">conditions générales d’utilisations</a> et notre <a href="https://www.lepoint.fr/html/politique-de-protection-donnees-personnelles/" title="Politique de confidentialité">politique de confidentialité</a>.</p> </div><p>Prise en charge dès la première apparition des symptômes, Ève Gilles a expliqué suivre un traitement depuis que le diagnostic est tombé à ses 14 ans, ce qui lui permet de vivre une vie presque normale. « J'ai une maladie invisible, mais pour autant je sais vivre avec. Et je vis très bien avec. »</p><h2><strong>Une maladie longtemps gardée secrète</strong></h2><p><span class="Capsule discover-kangourou"> <span class="Phylactery">À Découvrir</span> <strong class="discover-kangourou__line"> <img class="discover-kangourou__img" src="https://static.lpnt.fr/static/img/kangourou/kangourou_filled.svg" /> <strong class="discover-kangourou__txt"> <strong>Le Kangourou du jour</strong> <a href="https://kangourou.lepoint.fr" title="kangourou" data-gtm-cta="kangourou_article" class="discover-kangourou__lnk"> Répondre </a> </strong> </strong> </span>Pendant longtemps, Miss France 2024 a préféré garder le secret autour de sa maladie. « Je voulais que très peu de personnes soient au courant parce que c'était une maladie qui prenait beaucoup de place pour moi étant petite. Donc je ne voulais pas qu'elle me définisse en tant que femme et en tant que Miss », a-t-elle ajouté, émue.</p><div class="BeOpWidget"></div><p><span class="Capsule free"><span class="Phylactery">À LIRE AUSSI</span> <strong class="strong"><a href="https://www.lepoint.fr/societe/sabah-aib-miss-nord-pas-de-calais-candidate-a-miss-france-2025-cible-d-attaques-racistes-24-10-2024-2573534_23.php" title="Miss France : ras-le-bol du déferlement raciste !" style="text-decoration: none; color: inherit;" data-gtm="click:capsule" data-capsule="À lire aussi">Miss France : ras-le-bol du déferlement raciste !</a></strong></span> Elle est loin de voir sa maladie comme « une tare » : « C'est plutôt pour moi une force qui m'a fait grandir. » Si elle confie avoir déjà eu plusieurs crises lors d'événements publics pendant son année comme Miss France – durant un couronnement ou lors d'une cérémonie des Jeux olympiques de Paris –, Ève Gilles a choisi de médiatiser la maladie pour celles et ceux qui, comme elle, en souffrent. « Aujourd'hui, ce qui me pousse à prendre la parole, ce n'est pas juste de faire connaître ma maladie, c'est vraiment d'être un espoir pour ces personnes qui ont des maladies invisibles », explique-t-elle. Afin que, comme elle, ils n'aient pas peur de « rêver trop grand ».</p><APP_ONLY><JEU ID="5" TYPE="BON_NOMBRE"/></APP_ONLY> <div id="paywall-poool-article-gratuit"></div> </div> <section id="ne-pas-manquer" class="title-top"> <h2>À ne pas manquer</h2> <ul> <li> <h3 class="ListItem"> <a href="/monde/confrontee-aux-polemiques-miss-japon-rend-sa-couronne-07-02-2024-2551854_24.php" data-gtm-article="A ne pas manquer"> Confrontée aux polémiques, Miss Japon rend sa couronne</a> </h3> </li> <li> <h3 class="ListItem"> <a href="/culture/edna-tepava-miss-france-1974-est-decedee-08-10-2024-2572195_3.php" data-gtm-article="A ne pas manquer"> Edna Tepava, Miss France 1974, est décédée</a> </h3> </li> </ul> </section>        <div id="taboola-below-article"></div> <script type="text/javascript"> window._taboola = window._taboola || []; _taboola.push({ mode: 'thumbnails-a', container: 'taboola-below-article', placement: 'Below Article', target_type: 'mix' }); </script> <style> #taboola-below-article-split-num-1 { min-height: 3583px; 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Il faut vivre avec, et avoir les nerfs solides — au sens figuré, bien sûr.</p> <button class="more">Lire plus</button> </div> <div class="commentaire_abusif" id="commentaire_abusif_13343434"></div> <button class="comment-abuse signaler">Signaler</button> </li> <li class="commentaire" data-nb-comments="2" id="div_commentaire_13342946" data-load-php='true'> <div> <strong>macgda</strong> <time datetime="2024-10-31T0758"> 31-10-2024 • 07h58 </time> </div> <div class="commentaire-text"> <p>D être précisé et que la France en soit informée.</p> <button class="more">Lire plus</button> </div> <div class="commentaire_abusif" id="commentaire_abusif_13342946"></div> <button class="comment-abuse signaler">Signaler</button> </li> <li class="commentaire" data-nb-comments="3" id="div_commentaire_13340243" data-load-php='true'> <div> <strong>Nimportawak</strong> <time datetime="2024-10-28T0804"> 28-10-2024 • 08h04 </time> </div> <div class="commentaire-text"> <p>@ PETIT GIBS : <br /> <br /> Pauvre son !</p> <button class="more">Lire plus</button> </div> <div class="commentaire_abusif" id="commentaire_abusif_13340243"></div> <button class="comment-abuse signaler">Signaler</button> </li> </ul> <div style="text-align:center;"> <button class="btn next-comments" data-page="2">Voir les commentaires suivants</button> </div> </section>   </div> <aside>    <div id="CONT_WRAP_PAVE_ATF" class="slot-d"><div id="WRAP_PAVE_ATF" class="slotadm slot-d"><div id="PAVE_ATF" class="slotpub"></div></div></div>   <section id="info-continu" class="bloc-1"> <h2>L'info en continu</h2> <ul> <li > <h3 class="full-click"> <span class="time">16H30</span> <a href="/sante/quelle-alimentation-pour-reduire-les-effets-de-la-menopause-29-11-2024-2576715_40.php" data-gtm-article="L'Info en continu"> <span class="title">Quelle alimentation pour réduire les effets de la ménopause ?</span> </a> </h3> </li> <li > <h3 class="full-click"> <span class="time">11H00</span> <a href="/sante/cette-violence-qui-gangrene-la-medecine-25-11-2024-2576201_40.php" data-gtm-article="L'Info en continu"> <span class="title">Cette violence qui gangrène la médecine</span> </a> </h3> </li> <li > <h3 class="full-click"> <span class="time">13H00</span> <a href="/sante/une-innovation-change-la-vie-de-patientes-atteintes-de-fibromes-uterins-24-11-2024-2576135_40.php" data-gtm-article="L'Info en continu"> <span class="title">Une innovation « change la vie » de patientes atteintes de fibromes...</span> </a> </h3> </li> </ul> <a class="btn" title="Toute l'actualité en direct" href="/24h-info/sante/" data-gtm-cta="L'Info en continu">Toute l'actualité Santé </a> </section>   <div id="kam-d-t-m-2" class="slotkam slot-d-t-m"> <a href="https://abo.lepoint.fr/?provenance=AUTOPROMO00" data-gtm="click:abo" data-campaign="autopromo_col_droite"> <picture> <source media="(max-width: 767px)" srcset=" https://static.lpnt.fr/static/img/bannieres/banniere_abo_col.webp 1x, https://static.lpnt.fr/static/img/bannieres/banniere_abo_col_2x.webp 2x" > <source media="(min-width:768px) and (max-width: 1183px)" srcset=" https://static.lpnt.fr/static/img/bannieres/banniere_abo_tab.webp 1x, https://static.lpnt.fr/static/img/bannieres/banniere_abo_tab_2x.webp 2x" width="602" height="55" > <img alt="Abonnement Le Point" src="https://static.lpnt.fr/static/img/bannieres/banniere_abo_col.webp" srcset=" https://static.lpnt.fr/static/img/bannieres/banniere_abo_col.webp 1x, https://static.lpnt.fr/static/img/bannieres/banniere_abo_col_2x.webp 2x" width="320" height="151" loading="lazy" decoding="async" > </picture> </a> </div>    <section id="select-redac" class="bloc-1"> <h2>La sélection de la rédaction</h2> <article class="full-click"> <a href="/monde/russie-la-condamnation-d-une-pediatre-fait-scandale-28-11-2024-2576638_24.php" data-gtm-article="Sélection de la rédaction"> <h3 class="premium">En Russie, la condamnation d’une pédiatre fait scandale</h3> </a> <picture> <img loading="lazy" alt="" src="https://static-images.lpnt.fr/cd-cw200/images/2024/11/28/27096916lpw-27098470-sommaire-jpg_10681374.jpg" width="120" height="90"> </picture> </article> <article class="full-click"> <a href="/politique/emmanuel-macron-un-president-deambulateur-pour-la-reouverture-de-notre-dame-28-11-2024-2576598_20.php" data-gtm-article="Sélection de la rédaction"> <h3 class="premium">Emmanuel Macron, un président déambulateur à Notre-Dame</h3> </a> <picture> <img loading="lazy" alt="" src="https://static-images.lpnt.fr/cd-cw200/images/2024/11/28/27090412lpw-27091229-sommaire-jpg_10679914.jpg" width="120" height="90"> </picture> </article> <article class="full-click"> <a href="/monde/angela-merkel-la-democratie-liberale-est-en-danger-27-11-2024-2576568_24.php" data-gtm-article="Sélection de la rédaction"> <h3 class="premium">EXCLUSIF. 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