BIRMINGHAM, Mich. (WXYZ) — Michigan health officials are working to develop a registry for ALS patients that could improve care and quality of life for those living with the debilitating disease.
The Michigan Department of Health and Human Services estimates 200 new cases of ALS are diagnosed in the state each year, though officials don't currently know how many Michigan residents are living with the condition.
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ALS, also known as Lou Gehrig's disease, affects the brain and spinal cord, causing muscles to weaken. The average life expectancy after diagnosis is two to four years.
"We have not had a system that is statewide that's collecting this ALS information," said Beth Anderson, chronic disease epidemiologist section manager with MDHHS.
Last month, Michigan implemented a new rule requiring health care professionals who diagnose and treat ALS to report cases to the state health department.
"We're now going to know geographically where some of these people with ALS live. Maybe that's a place we can bring resources close to them, so they don't have to travel as far to get the care that they need," Anderson said.
Anderson says the data will collect information such as demographics, primary diagnosis, symptoms of disease and reporting facility. Clinics can either enter the data themselves from their medical records or send medical records directly to MDHHS.
Cathy Smith, who was diagnosed with ALS in 2022 after retiring from a 30-year teaching career at Forest Elementary School in Farmington Hills, is among those living with the disease.
"We have three grown kids all married. One grandbaby Cooper, who is 7 months old, and one on the way due in October. My husband, Gregg, is my caregiver and he is amazing," Smith said.
The disease has affected Smith's ability to walk, and she now uses a speech-to-text app on her phone to communicate.
Gregg Smith supports her through the challenges of the disease.
"What I say to her often is you didn't raise your hand, you didn't volunteer for this. With cancer and cardio vascular disease, we kind of know the causes. With ALS, we don't know the cause," he said.
Michigan is now the fifth state in the country to implement a mandatory ALS reporting, with plans to develop the registry by summer.
Cathy Smith is currently raising $20,000 for ALS of Michigan, an organization she credits with helping her navigate her journey with the disease.
"Everyone has some issue they deal with or will deal with in life. I have ALS, but it's not stopping me," Cathy Smith said.
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