First signs - Early symptoms of Late Onset Sandhoff can include clumsiness and muscle weakness in the legs. Once diagnosed, adults often reflect back to their childhood and may notice experiencing symptoms much earlier such as not being athletic and/or speech difficulties or a stutter as a child or teenager.
The mental health symptoms may present first which can lead to an especially long road to diagnosis. About 40% of affected adults experience mental health symptoms such as bi-polar or psychotic
episodes.
Gradual Loss of skills - Over time adults with Late Onset Sandhoff slowly decline. Adults frequently require more mobility assistance, i.e. cane to walker to wheelchair. Many experience speech and swallowing difficulties but few require a feeding tube.
Late Onset Sandhoff may be hard to diagnose. Some adults go 5 or more years before learning their true diagnosis. The disease may sometimes be misdiagnosed as Multiple Sclerosis or ALS.
Late Onset Sandhoff is a challenging and debilitating disorder but doesn’t always shorten life span like the childhood forms of Sandhoff. Visit Support for Tay-Sachs, Sandhoff, and GM-1 LOTS (Late Onset) to learn more about living a full and empowered life with Late Onset Sandhoff. LOTS is very similar to Late Onset Sandhoff.
