Every day, an average of 15 people are newly diagnosed with ALS and around 20,000 Americans are currently living with it.
“So ALS is a neurological condition that affects the motor system, the nerves that help with movement. And it’s characterized by degeneration of the upper motor neuron and the lower motor neuron, which results in symptoms primarily of muscle weakness,” explained Dr. Ryan Jacobson, an assistant professor of neurology at Loyola University.
The progressive disease, also known as Lou Gehrig’s Disease, currently has no cure and life expectancy is typically two to five years after diagnosis.
For over 20 years the only FDA-approved medication to help slow the progress of ALS has been Riluzole, but since May of last year, a new medication called Edaravone, also known as Radicava, hit the market.
“This is an infusion-based medication that was studied and shown to slow down the progression of the disease,” said Dr. Jacobson. “There are several other treatment avenues being pursued right now in research studies.”
Blood tests, MRIs, or other biomarkers can’t recognize the disease, making it difficult to diagnose.
“I went for a run in January of ’16 and just out of nowhere my foot felt like it had a boot on it or something. It was just very strange sensation,” said Elsie Johnson,a resident of Naperville and Dr. Jacobson’s patient.
After officially being diagnosed with ALS in March of 2017, Johnson looked at all of her possible treatment options, which led her to Edaravone. She became the first patient in Illinois, and one of the first in the nation, to receive the IV-based medication.
“I’d say the most unique feature of Elsie’s case is how motivated she has been to make sure that she is getting the right answers and getting the right treatments. And I know that she’s already become a very positive player in the ALS community,” said Dr. Jacobson.
In fact, Johnson fundraised close to $45,000 last year for the ALS Association.
Since starting the Edaravone infusions she’s continued to exercise, eat healthy, and take nutritious supplements.
“But I do feel like I’ve been walking a little bit better,” added Johnson. “But at the same time I did get the treadmill and I think that has brought back a little bit of muscle memory. But it’s hard to say.”
From stem cell therapy to cognitive studies, research continues to develop with the hope to one day find a cure for ALS.
And if you’d like to do something to help support research, the Greater Chicago Walk to Defeat ALS is taking place on June 2, at Cantigny Park.
Naperville News 17’s Christine Lena reports.
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