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NINDS Disorders is an index of neurological conditions provided by the National Institute of Neurological Disorders and Stroke. This valuable tool offers detailed descriptions, facts on treatment and prognosis, and patient organization contact information for over 500 identified neurological disorders.

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Creutzfeldt-Jakob Disease

Creutzfeldt-Jakob disease (CJD) is a rare, degenerative, invariably fatal brain disorder. Typically, onset of symptoms occurs at about age 60. There are three major categories of CJD:  sporadic CJD, hereditary CJD, and acquired CJD. There is currently no single diagnostic test for CJD. The first concern is to rule out treatable forms of dementia such as encephalitis or chronic meningitis. The only way to confirm a diagnosis of CJD is by brain biopsy or autopsy. In a brain biopsy, a neurosurgeon removes a small piece of tissue from the patient's brain so that it can be examined by a neurologist. Because a correct diagnosis of CJD does not help the patient, a brain biopsy is discouraged unless it is need to rule out a treatable disorder. While CJD can be transmitted to other people, the risk of this happening is extremely small.

Treatment

There is no treatment that can cure or control CJD. Current treatment is aimed at alleviating symptoms and making the patient as comfortable as possible. Opiate drugs can help relieve pain, and the drugs clonazepam and sodium valproate may help relieve involuntary muscle jerks.

Prognosis

About 90 percent of patients die within 1 year. In the early stages of disease, patients may have failing memory, behavioral changes, lack of coordination and visual disturbances. As the illness progresses, mental deterioration becomes pronounced and involuntary movements, blindness, weakness of extremities, and coma may occur.

Research

The leading scientific theory at this time maintains that CJD is caused by a type of protein called a prion. The harmless and the infectious forms of the prion protein are nearly identical, but the infectious form takes a different folded shape than the normal protein. Researchers are examining whether the transmissible agent is, in fact, a prion and trying to discover factors that influence prion infectivity and how the disorder damages the brain. Using rodent models of the disease and brain tissue from autopsies, they are also trying to identify factors that influence the susceptibility to the disease and that govern when in life the disease appears.

View a list of studies currently seeking patients.

View more studies on this condition.

Read additional information from Medline Plus.

Organizations

National Organization for Rare Disorders (NORD)

Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

55 Kenosia Avenue
Danbury, CT 06810
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

Alzheimer's Association

National voluntary health organization committed to finding a cure for Alzheimer’s and helping those affected by the disease.

225 North Michigan Avenue
Floor 17
Chicago, IL 60601-7633
Tel: 312-335-8700 1-800-272-3900 (24-hour helpline) TDD: 312-335-5886
Fax: 866.699.1246

Centers for Disease Control and Prevention (CDC)

U.S. Department of Health and Human Services
1600 Clifton Road, N.E.
Atlanta, GA 30333
Tel: 800-311-3435 404-639-3311/404-639-3543

Alzheimer's Disease Education and Referral Center (ADEAR)

National Institute on Aging
P.O. Box 8250
Silver Spring, MD 20907-8250
Tel: 1-800-438-4380
Fax: 301-495-3334

Department of Agriculture (USDA)

National Agricultural Library
10301 Baltimore Avenue
Beltsville, MD 20705-2351
Tel: 301-504-5755/301-504-6856 (TDD/TTY)
Fax: 301-504-6927

Food and Drug Administration (FDA)

U.S. Department of Health and Human Services
5600 Fishers Lane, CDER-HFD-240
Rockville, MD 20857
Tel: 301-827-4573 888-INFO-FDA (463-6332)

World Health Organization

Avenue Appia 20
1211 Geneva 27
Switzerland,
Tel: (+ 41 22) 791 21 11
Fax: (+ 41 22) 791 3111

Creutzfeldt-Jakob Disease (CJD) Foundation Inc.

Non-profit, volunteer foundation that promotes research, education, and awareness of CJD and reaches out to people affected by CJD.

341 W. 38th Street, Suite 501
New York, NY 10018
Tel: 800-659-1991
Fax: 330-668-2474

CJD Aware!

Non-profit organization established for support, information sharing, and advocacy.

2527 South Carrollton Ave.
New Orleans, LA 70118-3013
Tel: 504-861-4627

Family Caregiver Alliance/ National Center on Caregiving

Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels. Offers free publications and support online, including a national directory of publicly funded caregiver support programs.

785 Market St.
Suite 750
San Francisco, CA 94103
Tel: 415-434-3388 800-445-8106
Fax: 415-434-3508

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