ALS diagnosis upended their lives. Now they’re speaking out.
ALS strikes fast and without warning. A Rhode Island couple living with the disease shared their story this week as part of May’s ALS Awareness Month, sitting down with Shannon Hegy on WPRI’s 12 Health segment alongside the executive director of ALS United Rhode Island.
ALS—amyotrophic lateral sclerosis—attacks nerve cells that control voluntary muscle movement. People lose the ability to walk, speak, eat, and eventually breathe on their own. There’s no cure.
The couple didn’t shy away from the hard details of living with the diagnosis. Their story is one of Rhode Island families facing a disease that affects roughly 5,000 Americans at any given time, according to the National Institutes of Health.
ALS United Rhode Island provides resources, support groups, and advocacy for patients and families navigating the disease in the state.
