Advocating is priceless. People who take the time to advocate, in addition to living everyday with their rare disease challenges and treatments, is absolutely something to celebrate and cheer on. My two friends Chrisy and Kristen are women who are making a difference!
Christine “Chrisy” Klavitter and Dr. Kristen Kingzett are both rare disease advocates, but more importantly, they are people living this reality every single day. Chrisy lives with Stiff Person Syndrome, Myositis, Diastasis (from violent spasms) along with more challenges including a brain injury from a car accident. Kristen is an Internal Medicine physician and an ultra-rare cancer survivor, Juvenile Rheumatoid Arthritis (now known as Juvenile Idiopathic Arthritis) & Common Variable Immune Deficiency (CVID)..
Together, we talk about what life with rare disease actually looks like, beyond the statistics. From delayed diagnoses (which can take years, even decades) to the emotional and physical toll of navigating a fragmented healthcare system, this conversation is honest, eye-opening, and necessary.
More than 30 million people in the U.S. are living with a rare disease—defined as affecting fewer than 200,000 people. Yet despite those numbers, patients are still too often misunderstood, misdiagnosed, or left to navigate care on their own.
Chrisy and Kristen share what an average day can look like, the full-time job of managing health (or caring for someone who is), and what happens when patients have to push back, even redirect the so-called experts.
We also dig into the bigger questions:
Why does diagnosis still take so long, and how do we fix it?
What do providers, institutions, and policymakers still not understand?
What do you say to someone who believes “there’s nothing I can do”?
And where are we actually seeing progress in healthcare?
What stands out most is this: patients are not passive participants in their care—they are often the ones holding it all together.
About my guests:
Dr. Kristen Kingzett is an Internal Medicine physician, educator, and advocate who brings both professional expertise and lived experience, including Juvenile Idiopathic Arthritis, Common Variable Immune Deficiency, and an ultra-rare cancer. She serves on Michigan’s Rare Disease Advisory Council and Legislative Disability Caucus.
Chrisy Klavitter is a healthcare policy and patient advocate, biologist, and recreation therapist. Living with Stiff Person Syndrome and Myositis, she works to bridge communication gaps between patients, providers, researchers, and policymakers to improve care for complex conditions.
Rare disease may be defined by numbers, but its impact is anything but small. And if we build a healthcare system that works for rare disease patients, we build one that works better for everyone.
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