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Home: Early-Onset Familial AD: Overview
Early-Onset Familial AD: An Overview

Posted 26 November 2007

Important Notice: Alzheimer Research Forum does not provide medical advice nor promote any product or service. The contents are for informational purposes only and are not intended to substitute for professional medical advice, diagnosis or treatment. Always seek advice from a qualified physician or health care professional about any medical concern, and do not disregard professional medical advice because of anything you may read on this web site. The views of individuals quoted on this site are not necessarily those of the Alzheimer Research Forum.

Early-onset Familial Alzheimer Disease—A Knowledge Base for Families, Physicians, and Researchers

By Gabrielle Strobel

The Alzheimer Research Forum has developed this special section of the Alzforum website to provide a resource for all who share an intense interest in familial early-onset AD (eFAD). We have created this series of articles for patients, family members, doctors, and care providers, who need reliable, up-to-date information about diagnosis, treatment, genetic counseling and testing, and life issues connected with having this hereditary disorder. An equally important mission is to help eFAD families network with one another for mutual support and to connect with researchers who want to do a better job for individuals with eFAD. Managing Editor Gabrielle Strobel has interviewed eFAD family members, along with professional experts, and has written this series highlighting their personal stories, advice, and insights. We have been careful to protect the anonymity of eFAD family members.

AD in Mid-life: For Those Who Have Given So Much, So Little in Return
What Is Early-onset Familial Alzheimer Disease (eFAD)?
Sidebar: How Early-onset Dementia Led to a Historic Discovery

We welcome suggestions for improving this resource. We are interested in reference materials and links for eFAD. Researchers who are recruiting eFAD family members for research studies and clinical trials are invited to post their information. Please share this website with anyone who may be wrestling with early-onset FAD. We are here to help. All personal information will be kept in strict confidence.


Comments
  Comment by:  John T.
Submitted 27 April 2007  |  Permalink Posted 27 April 2007

[Editor's note: John T. is a pseudonym.]

My wife Claire, an RN, was diagnosed with EOAD when she was 52 years old. She is now in her mid-sixties and has late-stage AD. She is in a nursing home. Her cognition has been very low for seven years, and she has been in care for about the same amount of time. We have a son and daughter in their thirties, who are interested in knowing whether they might also become victims of AD. I noted symptoms of my wife's disease, such as a high level of anxiety, difficulty following directions, and memory loss, a number of years prior to her being diagnosed. I have not seen similar symptoms in either of my children.

View all comments by John T.


  Comment by:  Marcia Weiss
Submitted 1 August 2007  |  Permalink Posted 1 August 2007

[Editor's note: Marcia Weiss is a pseudonym.]

My husband has early-onset AD. He is 62 and at the end of his life. My two children are very worried of getting it, too. One has two babies; the other is working with a geneticist. We have already had my husband's DNA tested and are keeping that information on file, but due to other family problems my children have not gone forward with testing their own DNA at this point.

We are in support groups, but there is nothing anyone can say or do to help me get over the loss of my husband. The only thing that helps me is knowing God will take better care of him than anyone. We pray science will be able to step up and get control over all AD. The early form is the worst as it takes away family hopes and dreams. We are so sad all the time. When my husband passes on, I still want to support others and my family, too.

View all comments by Marcia Weiss

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Efad/EOAD Sidebars

How Early-onset Dementia Led to a Historic Discovery

Pushing the Envelope on Early Diagnosis

The Specter of Suicide

Taking the Plunge into Genetic Testing

Prevention With Statins: Can the Brain Learn From the Heart?

Efad/EOAD Interviewss

A Diagnostic Odyssey
NPR Interviews with Thomas Debaggio
A Courageous Family
Interview with Jennifer Williamson
One Man's Forward Approach
A Spouse's Perspective on Clinical Trials for eFAD
Q&A with Richard Bozanich
Interview with Lisa Genova

Early Onset AD Related Links

Actionalz.org Blog
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Alzheimer Europe
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MayoClinic

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