GRAND RAPIDS, Mich. — Rates of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, have been steadily rising in the United States for about the past decade, prompting new reporting requirements in Michigan.
In 2019, the National ALS Registry found over 29,000 cases. By 2022, that number jumped to about 33,000, and experts expect cases to rise an additional 10% by 2030.
Michigan has now become the fifth state in the country to make ALS reporting mandatory, joining efforts to better understand this trend.
"It is a disease that happens because the nerves that help you move lose the ability to send signals. It typically progresses relatively quickly and patients die from ALS," said Dr. Amit Sachdev from Michigan State University.
Health experts have attributed the rise to a larger aging population and possible environmental factors. Dr. Sachdev believes there should be multiple reasons for the rise in cases.
"We know that perhaps one in eight patients with ALS have it because of their genetics, but that leaves seven out of eight where we don't have an explanation as to why this has happened yet," Dr. Sachdev said.
A press release from the Michigan Department of Health and Human Services says the new mandate requiring offices to report ALS cases will assist in research, allowing the state to better assess trends and ultimately optimize care.
ALS of Michigan estimates that there are about 200 new ALS diagnoses in the state every year. In 2017, Jerry Frank was one of those diagnosed.
His daughter, Colleen Kondratek said it happens fast.
"It was the drop foot then the body twitches, he became weaker. He wasn't able to drive so he retired from work and eventually lifting a tooth brush or fork to eat was difficult," Colleen shared.
The disease eventually progressed to his lungs where he was placed on a ventilator. Jerry died in 2021.
"It's hard," Colleen admitted. "We used to fish all the time and to not be able to do that as a family it was tough."
Following her father's passing, Colleen went to work at Susan Mast ALS Foundation to help people like her dad.
The Susan Mast ALS Foundation provides support to ALS patients, families and caregivers living in West Michigan. Currently, the foundation serves 140 families.
"Every year it increases and that's pretty shocking to us," Colleen admitted.
Colleen said she's in favor of the new state mandate saying she hopes it helps experts finally get answers.
"This new mandate that's being put into place is going to really help us focus on these hot spots. Why? It's going to help us answer that question," Colleen said.
This story was reported on-air by a journalist and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy.
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