Kristin Rankin can’t get out of bed in the morning without the help of her husband, Kevin Kribs.
“I have my ups and downs,” Rankin said.
“It's just like Kristin said, she has her ups and downs. I think as a caregiver, I have my ups and downs, too,” Kribs said.
The couple’s emotional ride began in 2016.
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Kristin was on track to become a tenured professor when she started falling on her way to the train station.
“I counted 17 falls that spring and that wouldn't be the end of them,” Rankin told NBC Chicago.
Rankin also experienced muscle quivers and had trouble pinching her fingers. She went to see a neurologist. After two months of tests, the busy working mom of three young girls was diagnosed with amyotrophic lateral sclerosis or ALS, also known as Lou Gehrig’s disease.
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“My youngest was just turning three when I was diagnosed, so there was a period when she was gaining motor skills as I was losing them,” Rankin said.
ALS impacts the nerves that control our muscles, causing them to weaken and atrophy. There’s no cure.
“It was devastating to realize that our plans for our young family were completely upended by my diagnosis,” Rankin said.
Dr. John Coleman, a critical care pulmonologist at Northwestern Medicine and a member of Rankin’s extensive care team, says Rankin is not alone.
“I think she is a testament of the younger generation of people who have ALS. ALS has always been kind of thought about as a disease that has affected older people, maybe in their 60s or 70s, but we're seeing more and more young people being diagnosed with ALS,” Coleman said.
With help from a comprehensive clinical care team, Rankin HAS lived beyond the typical life expectancy.
“90% of people with ALS die within three to five years, but I've been lucky to get seven years and counting,” Rankin said.
Rankin takes nearly two dozen medications a day, including a medication called RELYVRIO, which earned FDA approval in the fall of 2022.
“These are drugs that have shown to slow progression of the disease,” Coleman explained.
Rankin is not a candidate for another new medication, topherson, just approved in April 2023 by the FDA.
“That is it is a medicine that is targeting those people with that specific mutation. But there are lots of people, 85% of people, who don't know what mutation they have,” Coleman said.
That’s why Rankin and her husband, Kevin Kribs, says more funding is needed to fuel more research.
“Historically, I think one of the reasons ALS has been underfunded is because it wasn't very visible,” Kribs said.
ALS has taken Rankin’s ability to speak clearly, making her voice difficult to understand. She uses a special voice tablet to communicate and says she will continue to make her voice heard that way.
“I want to be an example to challenge the assumption that ALS only affects older, white men,” Rankin said.
Rankin still works part-time and volunteers with “I am ALS”.
She also supports The Les Turner ALS Foundation a non-profit, determined to raise awareness about the fatal disease.
As her children go older, Rankin is sad she can’t teach them to cook or volunteer in their classrooms at school.
“I also really miss being able to give them a hug when they're down or I'm proud of them or just because,” Rankin said.
But she says she’s become a very good listener and has found other ways to connect with her husband and daughters, grateful for every moment she still has.
