Hvorfor tidlig diagnose er viktig ved Erdheim-Chester-syndromet: Marcs historie
Å få diagnosen en sjelden sykdom som Erdheim-Chester-syndromet (ECD) kan være overveldende. For mange er veien mot å finne svar lang, forvirrende og ofte preget av årevis med usikkerhet. Men det finnes historier som minner oss om hvorfor bevissthet, tidlig testing og et positivt livssyn er viktig. I dag har vi den ære å dele en av disse historiene.
In a series of three short video interviews, Marc Killips talks candidly about his journey to diagnosis and what early detection has meant for his life. His experience is a powerful reminder of why early diagnosis makes a difference in managing this complex and rare disease—and how staying positive can help along the way.
Se Marcs historie
We invite you to watch this brief video interview to hear Marc Killips’ journey in his own words. His experience is a testament to the power of early diagnosis, quick action, and the strength that comes from staying positive and finding community support.
Et liv som ble avbrutt, men ikke sporet av
Marc describes how his diagnosis came somewhat unexpectedly. “I went in because of equilibrium issues and tingling in my hands,” he shares. “It wasn’t intense. It was just… strange.” Like many, Marc initially thought it was something minor. But because his healthcare team took his concerns seriously and acted quickly with further testing, he received a diagnosis of ECD before the disease had significantly progressed.
“Jeg var heldig at de handlet raskt,” sier Marc. “Å få svar så snart som mulig gjorde en enorm forskjell for meg.”
Kraften i å lytte, handle raskt og holde en positiv innstilling
In the first video short, Marc reflects on the role his care team played in catching ECD early. “They listened,” he explains. “Even when things didn’t make sense, they kept digging.” Because of their persistence—and his own determination to stay positive—Marc was able to get an early diagnosis, which has made managing the disease much more achievable.
His story highlights the importance of not ignoring unusual symptoms, advocating for yourself, and staying hopeful, even when things are uncertain. Early testing and a positive mindset can lead to faster answers and better outcomes.
Å leve med kunnskap, støtte og håp
In the second segment, Marc talks about how receiving his diagnosis early gave him time to learn, connect, and plan. “It gave me the opportunity to understand what I’m dealing with,” he says. “I found the ECD Global Alliance early in my journey, and knowing I wasn’t alone made a huge difference.”
Marc fortsatte å se fremover, og han sier at støtten fra ECDGA-fellesskapet har bidratt til at han har kunnet bevare optimismen og holde seg oppdatert.
Fremover med selvtillit og positivitet
I den siste videoen forteller Marc om hvordan han ser på situasjonen i dag. “Det er ikke lett,” sier han. “Men jeg føler at jeg har et team, og at jeg har tid. Det har gjort hele forskjellen.”
Marc believes that staying positive has played a key role in how he’s approached his diagnosis and treatment. “You have to stay hopeful,” he says. “Getting tested early gave me time—time to understand, time to connect, and time to plan for the future.”
His story underscores the importance of early diagnosis—not just for patients, but for their families, care teams, and everyone impacted by ECD. The sooner ECD is identified and testing is completed, the sooner patients can access specialized care and the support they need.
Erdheim-Chester Disease Global Alliance (ECDGA) gir ikke medisinsk rådgivning, stiller ikke diagnoser og tilbyr ikke behandling. Alt innhold er kun ment som informasjon. Ta kontakt med helsepersonell dersom du har medisinske spørsmål.