Tay-Sachs, Late Onset

Common Name(s)

Tay-Sachs, Late Onset

Tay-Sachs disease, late onset is a special form of Tay-Sachs disease in which symptoms do not appear until later in life (Please also see: Tay-Sachs disease). Individuals with late onset Tay-Sachs disease begin to display symptoms between adolescence and their late 30s, while classical Tay-Sachs disease affects infants.

Symptoms of late onset Tay-Sachs disease vary greatly between different individuals, but may include muscle weakness or cramping, lack of coordination, difficulty swallowing, and difficulty walking. Symptoms often get worse with age. Like infantile Tay-Sachs disease, late onset is rare in the general population, but more common among people of Ashkenazi Jewish heritage. There is currently no cure for late onset Tay-Sachs disease, but symptoms can be managed with physical therapy and devices to help support those with difficulty walking.

If you or someone you know has been diagnosed with a late onset form of Tay-Sachs disease, speak with your doctor or genetic counselor to discuss the most current treatment options.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Tay-Sachs, Late Onset" for support, advocacy or research.

Center for Jewish Genetics

The Center is dedicated to gathering and disseminating knowledge about Jewish genetic disorders and hereditary cancers. Its mission is to educate and serve health care professionals, clergy and the Jewish community.

Last Updated: 26 Dec 2012

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Late Onset Tay-Sachs Research and Education Foundation

The Late Onset Tay-Sachs Research and Education Foundation was established in 2007 to educate and help people affected with this debilitating disease that strikes older children, teens and adults alike. We have gathered families, friends, doctors, medical researchers and people afflicted with Late Onset Tay-Sachs (LOTS). The world needs to know that Tay-Sachs affects others bedsides infants and very young children. In addition to providing information, support, networking and awareness, we raise funds to support medical research searching for innovative treatments and a cure.

Last Updated: 1 Jul 2013

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General Support Organizations

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Tay-Sachs, Late Onset" for support, advocacy or research.

Center for Jewish Genetics

The Center is dedicated to gathering and disseminating knowledge about Jewish genetic disorders and hereditary cancers. Its mission is to educate and serve health care professionals, clergy and the Jewish community.

http://www.jewishgenetics.org

Last Updated: 26 Dec 2012

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Late Onset Tay-Sachs Research and Education Foundation

The Late Onset Tay-Sachs Research and Education Foundation was established in 2007 to educate and help people affected with this debilitating disease that strikes older children, teens and adults alike. We have gathered families, friends, doctors, medical researchers and people afflicted with Late Onset Tay-Sachs (LOTS). The world needs to know that Tay-Sachs affects others bedsides infants and very young children. In addition to providing information, support, networking and awareness, we raise funds to support medical research searching for innovative treatments and a cure.

http://www.lateonsettay-sachs.org/

Last Updated: 1 Jul 2013

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Tay-Sachs, Late Onset" returned 0 free, full-text research articles on human participants.

Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Tay-Sachs, Late Onset" returned 0 free, full-text review articles on human participants.

 
 
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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

A Natural History Study of the Gangliosidoses
 

Status: Recruiting

Condition Summary: Tay Sachs Disease; Sandhoff Disease; Late Onset Tay Sachs Disease

 

Last Updated: 4 Dec 2014

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