Being a rare disease advocate becomes more personal for Kathi Luis


As the Special Projects Director at the Amyloidosis Foundation Kathi Luis is invested in the rare disease patients, families and caregivers that her nonprofit serves.

She is a dedicated and committed advocate for the Rare Disease Community.

The Amyloidosis Foundation, like most single rare disease patient focused organizations, is powered by a small staff. Kathi has one job title, but she commonly refers to herself as a “Jill of all trades.”

Dealing with the ongoing COVID-19 pandemic has made 2020 a very different year for everyone. Unfortunately for Kathi, the pandemic is not the only thing that has complicated her world lately.

Professionally, when your goal every single day is to help others and do what you can to make their lives better, the challenges of the pandemic make the job a little tougher.

What has added to Kathi’s perspective, is also enduring her own personal battle with a recently diagnosed case of heart failure, unsure exactly of the underlying cause. And like the rare disease patients she serves, the pandemic has impacted her access to treatment and answers. 

“It took me six months to get my diagnosis. At first I was so relieved and I’m not afraid to say I cried because I was relieved to have some kind of answer. I was no longer afraid of my shortness of breath and all the other symptoms I was experiencing,” Kathi said. “There’s certain medications I need that we have been concerned about getting and I can’t get my appointments scheduled because of COVID-19.  

“I was supposed to have an appointment one day after my state, Michigan, shut down. They are just adjusting my medications and I’ve had some Telehealth appointments. Everyone is so far behind. I’m scheduled, but it probably won’t be until August or September until I get an appointment.” 

Kathi’s diagnostic journey includes all the familiar challenges – access to care, worries about symptoms, adjustments in medications, difficulty getting answers when it comes to a diagnosis – that rare disease patients face. These very challenges are what Kathi works to overcome as a rare disease patient advocate.

Now it has become a more personal part of her journey.

“I now have an even better understanding of what my patients are talking about on so many fronts,” Kathi said. “It’s been something the last six months is the best way to put it. We have rare disease patients we know are crying out all around the world who are looking for help.”

Having gained a different perspective and understanding from her personal journey has only motivated her to make the obstacles of rare disease patients more clearly understood.

“Like everyone else, what we are hearing from the patients in our community has been tough,” Kathi said. “There was a lot of hopelessness, without their rehab, medication, treatments, clinical trials delayed or canceled … they didn’t have any hope. They are really defeated.  We have patients all over the world and it’s impacting our patient population the same everywhere. We know patients are missing critical appointments and clinical trials are either delayed or shut down completely and never coming back.”

“We all need to work hard to help patients find answers. That has always been at the center of what we do and why we do it. These people need our help.”

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