##  [Leven met HS](/nl-nl/therapeutische-gebieden/immunologie/leven-met-hs "Leven met HS") 

 ### Samen verlichten we HS 

HS verbergt zich in de schaduwen. Maar Hillian, Brian, Sharon, Steffani en Jindra doen dat niet. Door hun persoonlijke verhalen met ons te delen stappen zij in het licht. Over hoe HS hun leven beïnvloedt, de weg naar de diagnose en behandeling. Over dromen, teleurstellingen, pijn, maar ook hoop en liefde. De verhalen die het verdienen om gehoord worden.

  
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### Persoonlijke verhalen 

"Het is wij tegen de ziekte. En niet de ziekte tegen ons". Bekijk hier de 5 unieke en persoonlijke verhalen. Confronterend, ontroerend en leerzaam, maar boven alles inspirerend. Laat mensen met HS niet in de schaduw staan.



 



 "Psychisch is het grootste deel dat ik niet kan accepteren"



  

Maak kennis met Steffani. Ze deelt haar verhaal over hoe ze haar droom om in de patisserie te werken heeft moeten opgeven en het verdriet dat ze ervaart als gevolg van de psychische impact van HS. Ondanks alles inspireert ze met haar ongelooflijke kracht en doorzettingsvermogen om samen de strijd tegen HS aan te gaan. “Het is wij tegen de ziekte. En niet de ziekte tegen ons.”

  
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 "Je baalt als een stekker, je weet niet meer welke kant je op moet"



  

“Toen kwam ik bij m’n huisarts, die wist gelijk wat het was. Jij hebt Hidradenitis.” Ondanks dat de diagnose bij Hillian gelijk werd gesteld was de zoektocht naar de juiste behandeling lang; van medicamenteuze opties tot chirurgie, verlichting bleef uit of was van korte duur. Luister naar haar bijzondere verhaal over doorzetten en positief blijven, waarbij ze uiteindelijk haar schaamte heeft overwonnen.

  
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 "Het is één van die verborgen ziektes, dus je verbergt het sneller"



  

“Het gaat echt om dat je zo pijnloos mogelijk en zo mooi mogelijk het leven door kan lopen.” Maak kennis met Jindra, bij wie het allemaal begon met enkele plekken in haar lies, maar helaas de ziekte al snel zag verspreiden door haar lichaam. Jindra werd geconfronteerd met de vraag: wanneer houdt het op? Ondanks dat HS al bekend was in haar familie, kwam de de diagnose als een baksteen binnen. Gesterkt door haar omgeving vindt ze haar weg naar acceptatie, en zelfs een manier om ‘normaal’ te leven. Luister naar een bijzonder verhaal over transformatie van schaduw naar licht.

  
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 "Op mijn gezicht voelde het als een soort prikkeldraad"



  

Sharon kreeg op jonge leeftijd al te maken met plekken in haar gezicht en op haar rug. Na een lang traject waarin verschillende behandelingen niet de gewenste verlichting brachten, werd op 26-jarige leeftijd de diagnose HS gesteld. De impact van HS op Sharon’s leven is groot, maar eindelijk weten wat je hebt brengt ook kracht en motivatie om er iets mee te doen. Luister naar een hoopvol verhaal over hoe ze zich gesterkt voelt door haar liefdevolle partner en haar kinderen om zichzelf te accepteren, in het licht te stappen en voorbeeld te zijn voor anderen.

  
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 "Houd er maar rekening mee dat jouw zoon alle mogelijk huidproblemen kan krijgen en zal krijgen"



  

Ontmoet Brian, een jongeman die nu vol in het leven staat, maar op 12-jarige leeftijd al werd getekend door HS. Verkeerde medicatie, ernstige wonden, pijnlijke opmerkingen en pesten zorgden voor jaren van zware beproeving, zowel fysiek als mentaal. Maar een nieuwe opleiding, acceptatie en waardering door nieuwe vrienden brachten hoop en energie. Het leven werd weer leuk. Bekijk het verhaal van Brian over nooit opgeven; “er zijn altijd mensen die bereid zijn jou koste wat het kost te helpen”.

  
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      disable: true    };
  }

      if (kPlayer.plugins["preventSeek"]) {
      config.plugins.preventSeek = {
        preventSeekForward: false,
        preventSeek: false      };
    }
    config.plugins.floating = {
      disable: true    };
    if (kPlayer.plugins["navigation"]) {
      config.plugins.navigation = {
        position: "right",
        expandMode: "over",
        expandOnFirstPlay: false,
        visible: false      };
    }
    if (kPlayer.plugins["hotspots"]) {
      config.plugins['playkit-js-hotspots'] = {
        disable: true      };
    }
    if (kPlayer.plugins["moderation"]) {
      config.plugins['playkit-js-moderation'] = {
        disable: true      };
    }
    if (kPlayer.plugins["info"]) {
      config.plugins['playkit-js-info'] = {
        disable: true      };
    }
    if (kPlayer.plugins["share"]) {
      config.plugins.share = {
        disable: true      };
    }
          config.ui.uiComponents = [];
                    if (kPlayer.plugins["googleAnalytics"]) {
      config.plugins.googleTagManager = {};
      config.plugins.googleTagManager.customEventsTracking = {};
      config.plugins.googleTagManager.containerId = 'GTM-57RJQ5';
              config.plugins.googleTagManager.customEventsTracking.custom = [];
                    config.plugins.googleTagManager.customEventsTracking = {
          preset: {
            coreEvents: true,
            UIEvents: false,
            playlistEvents: false,
            castEvents: false
          }
        };
          }
  



 
    // Ensure the global player registry array always exists, regardless of embed type.
    window.kalturaPlayerVideos = window.kalturaPlayerVideos || [];
    try {
              var thumbEmbedPromise = __thumbnailEmbed({config, mediaInfo: {entryId: "1_4rwq1u9c"}});
        // __thumbnailEmbed() returns a Promise that resolves with the player instance
        // when the user clicks the thumbnail. Use .then() to capture the player directly.
        thumbEmbedPromise
          .then(function(player) {
            window.kalturaPlayerVideos.push(player);
            // Notify kaltura_datalayer.js that a new player is ready so it can
            // attach custom event listeners immediately, regardless of when
            // the user clicked the thumbnail relative to page load.
            document.dispatchEvent(new CustomEvent('kalturaPlayerReady', { detail: { player: player } }));
          })
          .catch(function(error) {
            console.error(error);
          });
          } catch (e) {
      console.error(e.message)
    }
  

 







 

 

 



 



 

 





 ![Arts in overleg met patient](/nl-nl/sites/novartis_nl/files/styles/cta_image/public/2024-12/tile%20arts.png.webp?itok=SK5UmMew "Arts in overleg met patient") 

 

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 [Leer meer](https://www.zorgverlener.novartis.nl/therapeutische-gebieden/dermatologie/hidradenitis-suppurativa-hs "Leer meer")