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 J’ai posé mes mots, Donna leur a donné une voix.
Ensemble, on raconte la vie avec une maladie chronique, avec des notes de douceur et une pointe d’humour.




Hébergé par Ausha. Visitez ausha.co/fr/politique-de-confidentialite pour plus d'informations.</description>
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 J’ai posé mes mots, Donna leur a donné une voix.
Ensemble, on raconte la vie avec une maladie chronique, avec des notes de douceur et une pointe d’humour.




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 J’ai posé mes mots, Donna leur a donné une voix.
Ensemble, on raconte la vie avec une maladie chronique, avec des notes de douceur et une pointe d’humour.




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                <pubDate>Tue, 12 Aug 2025 08:56:28 +0000</pubDate>
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                <pubDate>Tue, 12 Aug 2025 08:55:07 +0000</pubDate>
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                <description><![CDATA[<p>🌿🎶 NOUVELLE CHANSON : “Verneuil” 🎶🌿</p><p>Parce que cette maladie ne se limite pas à des nodules ou à des douleurs cachées.</p><p>Parce qu’elle fait partie de moi, mais ne me définit pas toute entière.</p><p>Parce qu’il était temps de mettre des mots sur l’indicible, des notes sur l’invisible.</p><p>J’ai écrit cette chanson avec mes tripes, mes cicatrices et ce besoin immense d’être entendue, pour moi et pour toutes celles et ceux qui vivent avec cette pathologie encore trop méconnue.</p><p>💡 Texte et illustrations : moi-même (Spondy_hsd)</p><p>🎤 Voix &amp; musique : générées par Donna (voix synthétique, mais émotions bien réelles)</p><p>🔗 Voici le lien vers la chanson sur YouTube: <a href="https://youtu.be/kJ2NwS6KJ94?si=y4oRc2VxwZknEJU8">https://youtu.be/kJ2NwS6KJ94?si=y4oRc2VxwZknEJU8</a></p><p>Et toi… tu connaissais la maladie de Verneuil ? Tu l’as déjà croisée sur ton chemin ou celui de quelqu’un que tu aimes ? 💬</p><p>#Verneuil #MaladieDeVerneuil #ChansonChronique #DouleursInvisibles #CorpsCabossé #JournalDeMesDouleursChroniques #Pokéchronik #VisibilitéMaladie #Autoédition #SpondyHsd #SensibilisationAvecHumourEtTendresse</p><br/><p>Hébergé par Ausha. Visitez <a href="https://ausha.co/politique-de-confidentialite">ausha.co/politique-de-confidentialite</a> pour plus d'informations.</p>]]></description>
                <content:encoded><![CDATA[<p>🌿🎶 NOUVELLE CHANSON : “Verneuil” 🎶🌿</p><p>Parce que cette maladie ne se limite pas à des nodules ou à des douleurs cachées.</p><p>Parce qu’elle fait partie de moi, mais ne me définit pas toute entière.</p><p>Parce qu’il était temps de mettre des mots sur l’indicible, des notes sur l’invisible.</p><p>J’ai écrit cette chanson avec mes tripes, mes cicatrices et ce besoin immense d’être entendue, pour moi et pour toutes celles et ceux qui vivent avec cette pathologie encore trop méconnue.</p><p>💡 Texte et illustrations : moi-même (Spondy_hsd)</p><p>🎤 Voix &amp; musique : générées par Donna (voix synthétique, mais émotions bien réelles)</p><p>🔗 Voici le lien vers la chanson sur YouTube: <a href="https://youtu.be/kJ2NwS6KJ94?si=y4oRc2VxwZknEJU8">https://youtu.be/kJ2NwS6KJ94?si=y4oRc2VxwZknEJU8</a></p><p>Et toi… tu connaissais la maladie de Verneuil ? Tu l’as déjà croisée sur ton chemin ou celui de quelqu’un que tu aimes ? 💬</p><p>#Verneuil #MaladieDeVerneuil #ChansonChronique #DouleursInvisibles #CorpsCabossé #JournalDeMesDouleursChroniques #Pokéchronik #VisibilitéMaladie #Autoédition #SpondyHsd #SensibilisationAvecHumourEtTendresse</p><br/><p>Hébergé par Ausha. Visitez <a href="https://ausha.co/politique-de-confidentialite">ausha.co/politique-de-confidentialite</a> pour plus d'informations.</p>]]></content:encoded>
                <pubDate>Fri, 08 Aug 2025 13:36:38 +0000</pubDate>
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🌿🎶 NOUVELLE CHANSON : “Verneuil” 🎶🌿
Parce que cette maladie ne se limite pas à des nodules ou à des douleurs cachées.
Parce qu’elle fait partie de moi, mais ne me définit pas toute entière.
Parce qu’il était temps de mettre des mots sur l’indicibl...</itunes:subtitle>

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                <description><![CDATA[<p>🎵 “Spondylartrite” – une chanson pas si douce pour une maladie pas si invisible</p><p>Paroles &amp; visuel : moi</p><p>Voix &amp; musique : générées avec soin (et un peu de magie numérique)</p><p>---</p><p>Parce qu’on ne met pas toujours des mots sur ce qu’on vit,</p><p>Parce qu’on entend trop souvent "c’est dans la tête" ou "tu fais trop attention",</p><p>Parce qu’un dos qui brûle, des poignets qui hurlent, un bassin en feu… ça mérite plus qu’un Doliprane.</p><p>J’ai écrit cette chanson avec mes tripes, mes douleurs… et un peu d’espoir entre les lignes.</p><p>Pour tous ceux qui vivent avec la spondylartrite (ou sa cousine pas encore diagnostiquée),</p><p>Pour tous ceux qui plient sans rompre.</p><p>Pour qu’on entende enfin ce qui ne se voit pas.</p><p>💥 La spondy ne m’écrit pas de répit.</p><p>Alors j’écris à sa place.</p><p>Et si ça vous parle, si vous vous y reconnaissez… laissez un mot. Ça fait du bien.</p><p>#Spondylartrite #MaladieChronique #InvisibleMaisBienPrésente</p><p>#JournalDeMesDouleursChroniques #TeamDouleurs</p><p>#MusiquePourDire #ParolesDeMalade #CréationEngagée</p><p>#JePlieMaisJeCassePas #SpondyHSD #CombatSilencieux</p><br/><p>Hébergé par Ausha. Visitez <a href="https://ausha.co/politique-de-confidentialite">ausha.co/politique-de-confidentialite</a> pour plus d'informations.</p>]]></description>
                <content:encoded><![CDATA[<p>🎵 “Spondylartrite” – une chanson pas si douce pour une maladie pas si invisible</p><p>Paroles &amp; visuel : moi</p><p>Voix &amp; musique : générées avec soin (et un peu de magie numérique)</p><p>---</p><p>Parce qu’on ne met pas toujours des mots sur ce qu’on vit,</p><p>Parce qu’on entend trop souvent "c’est dans la tête" ou "tu fais trop attention",</p><p>Parce qu’un dos qui brûle, des poignets qui hurlent, un bassin en feu… ça mérite plus qu’un Doliprane.</p><p>J’ai écrit cette chanson avec mes tripes, mes douleurs… et un peu d’espoir entre les lignes.</p><p>Pour tous ceux qui vivent avec la spondylartrite (ou sa cousine pas encore diagnostiquée),</p><p>Pour tous ceux qui plient sans rompre.</p><p>Pour qu’on entende enfin ce qui ne se voit pas.</p><p>💥 La spondy ne m’écrit pas de répit.</p><p>Alors j’écris à sa place.</p><p>Et si ça vous parle, si vous vous y reconnaissez… laissez un mot. Ça fait du bien.</p><p>#Spondylartrite #MaladieChronique #InvisibleMaisBienPrésente</p><p>#JournalDeMesDouleursChroniques #TeamDouleurs</p><p>#MusiquePourDire #ParolesDeMalade #CréationEngagée</p><p>#JePlieMaisJeCassePas #SpondyHSD #CombatSilencieux</p><br/><p>Hébergé par Ausha. Visitez <a href="https://ausha.co/politique-de-confidentialite">ausha.co/politique-de-confidentialite</a> pour plus d'informations.</p>]]></content:encoded>
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🎵 “Spondylartrite” – une chanson pas si douce pour une maladie pas si invisible
Paroles &amp;amp; visuel : moi
Voix &amp;amp; musique : générées avec soin (et un peu de magie numérique)
---
Parce qu’on ne met pas toujours des mots sur ce qu’on vit,
Parce qu’...</itunes:subtitle>

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