IF YOU ENCOUNTER RESULTS OF AN RESISTANCE AUTOPSY

If you wish to discuss the possibility of an If you are like most families, you will want autopsy, but your doctor or funeral direc- the results immediately. Realistically, these tor is resistant, please contact the CJD tests take weeks to complete. The initial Foundation at 1.800.659.1991 or or the report of the autopsy results will be sent to National Prion Disease Pathology your physician approximately 5 - 6 weeks Surveillance Center (NPDPSC) after the autopsy is performed. DNA results immediately at 216.368.0587. There is a take longer, usually 10 - 12 weeks. national pathology network working with the NPDPSC and autopsies are usually We recommend that you review the report performed within a matter of hours. with your physician. If you have further Memorial arrangements should not be questions, please call the CJD Foundation affected. and we will help you.

AUTOPSY IS FREE TO FAMILIES through the NPDPSC and the support of the Centers for Disease Control and Prevention. This free service is offered to any suspected or confirmed CJD case in the United States.

The CJD Foundation, Inc. PO Box 5312 Akron, Ohio 44334 1.800.659.1991

HelpLine 1.800.659.1991 HelpLine 1.800.659.1991

www.cjdfoundation.org www.cjdfoundation.org [email protected] [email protected] YOUR REALITY PURPOSE OF AN MYTHS ABOUT AUTOPSY TODAY AUTOPSY MYTH: There can be no viewing at You are dealing with a loved one  It is the only way to confirm CJD the funeral home. stricken with Creutzfeldt-Jakob  Autopsy provides answers. TRUTH: Viewing of the body is possible if Disease. We know this is a There are different types of CJD, that is your desire. In a correctly performed painful, difficult time. You are which can only be discovered autopsy there should be no sign that an coping with an ugly disease that through an autopsy. autopsy has taken place. steals your loved one away day by day.  Autopsy results can determine

whether or not your loved one’s form of CJD was genetic. MYTH: Embalming is not possible CJD usually has a rapid course. It brings many questions and few,  CJD brain tissue is rare and after an autopsy. if any, answers. We wish the greatly needed to advance re- TRUTH: Embalming is possible. In some reality was different. search. states it is even required unless there are religious reasons not to embalm. We have  Answers will help in the grief Prion disease researchers are an embalmer’s guide available on our process. It is a family’s one website and an educational DVD for funeral working hard to change that chance for answers. reality. You deserve answers directors and embalmers. and support as you cope with the  Autopsy results help the Centers illness of your loved one. for Disease Control and Prevention track the types and demographics of patients with MYTH: The funeral will be delayed The CJD Foundation offers CJD in the United States. by days. support and information. Please

TRUTH: The funeral will not be delayed at contact us at 1.800.659.1991 or all in most situations. If there is a need for [email protected]. extra time, it is usually only a delay of one

day. This is VERY rare.

TYPE OF AUTOPSY

The only autopsy needed is of the brain itself. All tissue is treated with great respect and kept permanently to be used www.cjdsurveillance.com for CJD research. To set-up an autopsy free of charge, contact the National Prion Disease Pathology Surveillance www.cjdfoundation.org Center (NPDPSC) at 216.368.0587