Why Early Diagnosis Matters in Erdheim-Chester Disease: Marc’s Story
Being diagnosed with a rare disease like Erdheim-Chester Disease (ECD) can be overwhelming. For many, the path to finding answers is long, confusing, and often marked by years of uncertainty. But there are stories that remind us why awareness, timely testing, and a positive outlook matter. Today, we are honored to share one of those stories.
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.
A Life Interrupted, But Not Derailed
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.
“I was fortunate they moved fast,” Marc says. “Getting answers sooner rather than later made a huge difference for me.”
The Power of Listening, Acting Early, and Staying Positive
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.
Living with Knowledge, Support, and Hope
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’s outlook remained focused on moving forward, and he credits the support of the ECDGA community with helping him stay optimistic and informed.
Moving Forward with Confidence and Positivity
In the final clip, Marc shares his perspective today. “It’s not easy,” he says. “But I feel like I have a team, and I have time. That’s made all the difference.”
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.
Watch Marc’s Story
We invite you to watch these three brief video interviews 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.
Video 1 – The First Signs: How Equilibrium Issues and Tingling Led to Answers
Video 2 – Finding Support: Discovering the ECDGA Community
Video 3 – Looking Ahead: Living with ECD After an Early Diagnosis
The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.