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Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Late Onset Sandhoff Disease


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.

Long Road to Diagnosis

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.

Living with Late Onset Sandhoff

Late Onset Sandhoff is a challenging and debilitating disorder but doesn't always shorten life span like the childhood forms of Sandhoff. Visit Tay-Sachs, Sandhoff and GM-1 Late Onset Support to learn more about living a full and empowered life with Late Onset Sandhoff.

FDA Listening Session

NTSAD was granted an a Patient-led Listening Session with the FDA for Late Onset GM2 that was held virtually on Janurary 15, 2021. The objectives were to provide an understanding of Late Onset GM2 Gangliosidosis (Tay Sachs and Sandhoff), burden and symptom progression, heterogeneity of Late Onset GM2, and potential issues related to drug development.

Download the summary here NTSAD Late Onset GM2 Listening Session Summary.