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The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
Spongiform encephalopathy
Gerstmann Straussler Scheinker syndromeGerstmann-Straussler-Scheinker diseaseAmyloidosis cerebral with spongiform encephalopathy
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Overview
Gerstmann-Straussler-Scheinker disease is a neurodegenerative brain disorder which causes ataxia and dementia. It is almost always inherited and is found in only a few families around the world. Onset of the disease usually occurs between the ages of 35 and 55. Gerstmann-Straussler-Scheinker disease belongs to a family of human and animal diseases known as the transmissible spongiform encephalopathies (TSEs) or prion diseases. Other TSEs include Creutzfeldt-Jakob disease, kuru, and fatal familial insomnia.
Source: Genetic and Rare Diseases Information Center (GARD), supported by ORDR-NCATS and NHGRI.
Description Last Updated: Dec 28, 2013
Description Last Updated: Dec 28, 2013
Trusted Medical Sites
Genetic & Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Support Organizations
Support organizations can provide help and guidance in areas such as peer matching, education and training, and therapy and counseling.
Disease Resources
Resources can help guide your quest for factual and reliable information.
VHL Alliance Newsletter
The newsletter is designed to educate and empower patients and all those impacted by VHL. It is a critical piece of VHLA’s educational and support efforts.
VHL Alliance Blog
There are no true rules for the VHL journey. It is different for everyone. VHL impacts everyone, the VHLer and those who love the VHLer. Read how others are living through and thriving during their journey.
The VHL Handbook: What You Need to Know About VHL
A reference handbook patients, caregivers and healthcare providers; it explains how VHL occurs, how to monitor and test for possible medical issues, and common treatment options to consider.
AMP Lunch & Learns for Patient Advocacy Groups
AMP holds periodic lunch events in Washington, DC for the patient advocacy group audience to inform about and discuss molecular testing (example: reimbursement challenges).
AMP Online Education
AMP has an extensive collection of education about molecular testing.