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- Patient Comments: Creutzfeldt-Jakob Disease - Experience
- What is Creutzfeldt-Jakob disease (CJD)?
- What are the symptoms of Creutzfeldt-Jakob disease?
- How is CJD diagnosed?
- How is Creutzfeldt-Jakob disease treated?
- What causes Creutzfeldt-Jakob disease?
- How is CJD transmitted?
- How can people avoid spreading Creutzfeldt-Jakob disease?
- What Creutzfeldt-Jakob disease research is taking place?
- How can I help Creutzfeldt-Jakob disease research?
- Where can I get more information?
How Can People Avoid Spreading the Disease?
Normal sterilization procedures such as cooking, washing, and boiling do not destroy prions. Caregivers, healthcare workers, and undertakers should take the following precautions when they are working with a person with CJD:
- Cover cuts and abrasions with waterproof dressings.
- Wear surgical gloves when handling a patient's tissues and fluids or dressing the patient's wounds.
- Avoid cutting or sticking themselves with instruments contaminated by the patient's blood or other tissues.
- Use disposable bedclothes and other cloth for contact with the patient. If disposable materials are not available, regular cloth should be soaked in undiluted chlorine bleach for an hour or more, and then washed in a normal fashion after each use.
- Use face protection if there is a risk of splashing contaminated material such as blood or cerebrospinal fluid.
- Soak instruments that have come in contact with the patient in undiluted chlorine bleach for an hour or more, then use an autoclave (pressure cooker) to sterilize them in distilled water for at least one hour at 132-134 degrees Centigrade.
Fact sheets listing additional precautions for healthcare workers and morticians are available from the NINDS and the World Health Organization.
What Research Is Taking Place?
Many researchers are studying CJD. They are examining whether the transmissible agent is, in fact, a prion or a product of the infection, and are 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 susceptibility to the disease and that govern when in life the disease appears. They hope to use this knowledge to develop improved tests for CJD and to learn what changes ultimately kill the neurons so that effective treatments can be developed.
How Can I Help Research?
Scientists are conducting biochemical analyses of brain tissue, blood, spinal fluid, urine, and serum in hope of determining the nature of the transmissible agent or agents causing Creutzfeldt-Jakob disease. To help with this research, they are seeking biopsy and autopsy tissue, blood, and cerebrospinal fluid from patients with CJD and related diseases. The following investigators have expressed an interest in receiving such material:
Dr. Pierluigi Gambetti, Director
National Prion Disease Pathology Surveillance Center
Institute of Pathology
Room 419, Case Western Reserve University
2085 Adelbert Road
Cleveland, OH 44106
Telephone: (216) 368-0587
Fax: (216) 368-4090
Dr. Laura Manuelidis
Yale University School of Medicine
Section of Neuropathology
310 Cedar Street
New Haven, Connecticut 06510
Telephone: (203) 785-4442
Dr. Stephen DeArmond or Dr. Stanley Prusiner
Department of Pathology/Neuropathology Unit
University of California, San Francisco
San Francisco, California 94143
Telephone: (415) 476-5236