Welcome!!!

[kgnoth]

Good morning,
I'm new here and I just found out this morning that I am at 2x the risk for Alzheimer. I found this group through Promethease where I uploaded my raw DNA results from 23 and me. This is what they explained: You carry one APOE-ε3 allele and one APOE-ε4 allele. This results in 2x increased relative risk of Alzheimer's disease. For non-caucasians the risk is increased, but SNPedia has not yet seen any reliable estimates. This is based on
• rs429358(C;T)
• rs7412(C;C)

Can someone explain the severity of this result? Layman's terms please.

[SusanJ]

Borrowed from forum member searcher in another post.

According to the Lancet Journal:

There is a 65% non-modifiable risk (meaning genetic) including 7% contributed by the ApoE4 allele, so about 58% of your AD risk is attributable to OTHER genes.

The ApoE4 allele is only ONE risk factor for dementia. For example, hearing loss is estimated to increase your risk of dementia by even more than the APOE4 allele does. If you look at the graphic, you'll see other health issues like hypertension, diabetes and obesity are modifiable risks. So, for example, if you have a genetic tendency (often seen in family history) of diabetes, that will be a very important risk factor to tackle.

The graphic is at http://www.thelancet.com/infographics/dementia2017.

Part of your risk is also based on gender - women are more at risk than men.

[Jan]

You may not have seen our site Primer, kgnoth, which explains much of what you're asking in detail. Here's a link: viewtopic.php?f=33&t=1418

But as you read more threads, you'll find that control of a great deal of the risk is already in your hands - in the form of modifying your diet and lifestyle.

Dr. Dale Bredesen's book, The End of Alzheimer's: the First Program to Prevent and Reverse Cognitive Decline, came out recently, and is full of risk-reducing factors. Many on the site follow Dr. Steven Gundry, whose latest book is Plant Paradox.

Risk is just that - risk. Not determination.

[Hilde3/4]

Diagnosed last December with MCI, tested positive for APOE3/4 as well as MTHFR T/T. I am retired RN, 65yrs old, began to have problems with word retrieval about 3 yrs ago, not so much forgetfulness in the beginning, now quite forgetful, went to see Dementia specialist at local university last year after getting lost for a few seconds in a restaurant that I frequented once a week. Father died from dementia, two aunts, and 2 cousins on father’s side all afflicted. Have had heart problems in the past, always had great diet, at times even vegetarian, perfect weight, exercise, ex smoker, but quit over 30yrs ago. Have joined AD early stage and MCI support groups, good social and family support. Just found out about your site last week, forget where. Wondering if anyone else here is also MTHFR T/T which is another risk factor.
Glad to have found this site.

[Jan]

Welcome, Hilde3/4. I'm so sorry to hear that your family has experienced so many difficulties, and that you now have encountered some problems. I'm glad that your immediate response, when you realized there was a problem, was to find help. I'm guessing you have a fighting spirit, and that will be of great benefit to you, as will your nursing background. Wonderful positives!

Let me point you toward our site Primer, written by a physician member, which contains a huge amount of helpful explanations and information: viewtopic.php?f=33&t=1418

With your question about MTHFR T/T, is your concern about methylation, or perhaps B12 deficiency? The MTHFR snp has been discussed often on our site. I put it into our site search engine (the three stacked squares at the top of the page, to the right of your name), and got these results: search.php?st=0&sk=t&sd=d&sr=posts&keywords=MTHFR+T%2FT

And are you familiar with Dr. Dale Bredesen's book, which came out recently: The End of Alzheimer's: the First Program to Prevent and Reverse Cognitive Decline. Dr. Bredesen has a 36 point protocol to address factors that are risks for cognitive decline. Do you know how many of those you might have implemented already? At your age, I believe Dr. Bredesen would suggest that you try to implement as many as possible, as quickly as possible. (They focus primarily on diet and lifestyle interventions, many of which can be easily incorporated into your daily life.)

We are so glad you found our site, and send you a most hearty welcome, and to your family as well. We are glad to support you in your journey!

[SusanJ]

Wondering if anyone else here is also MTHFR T/T which is another risk factor.

Hi Hilde3/4, so sorry with all the family history. Many of us have walked that road. The Primer will give you good ideas of where to start.

And yes I am a 3/4 and also TT on MTHFR C677T. I put together quite a bit of information about this. It can be a little scientific in places, but do give it a read. MTHFR is very treatable with supplements.

https://wiki.apoe4.info/wiki/Methylation#MTHFR_gene - some background about the gene

https://wiki.apoe4.info/wiki/Methylation#MTHFR - how to treat it

[Hilde3/4]

Thank you, some of this info was forwarded to me by lab that did my screening last year, but I appreciate more details since I read everything that I can find regarding cognitive impairment.

[carmenwnpr]

Hi guys--
My name is Carmen, nice to meet you all! I was hoping to reach out to a few of the moderators to talk, but I don't seem to be able to send private messages. I'll put my question here, and I'd love it if someone would be willing to reach out and talk with me a bit more, I would really appreciate it.

TL;DR: I'm a public radio journalist who also has a family history of Alzheimer's; I'd like to talk with some people about the decision to do a genetic test for APOE4, and and what being part of the APOE4 community is like.

~~

I'm in my twenties, but have quite a bit family history of Alzheimers. My grandmother is currently suffering from fairly advanced stages of the disease. Her sister also experienced Alzheimers. On the other side of my family my other grandmother suffered from Parkinsons/Lewy Body dementia. So understanding genetic linkages in Alzheimers is something I care a lot about personally--both because of the disease's effect on my grandma but also as I wonder about my own future.

Several of my family members have talked about doing tests to see if we are APOE4 positive, and among my family different people have very strong views--some of my relatives really would like to know if they are likely to get Alzheimers so they can prepare ahead of time; others feel very strongly that they do not want to know. I fall somewhere in the middle, and go back and forth. Given my family history of dementia, I really struggle with whether or not I'd want to know my APOE4 status--whether that would be a helpful thing to know in my life, or whether it would be something where I'd be better off not knowing.

By day, I'm a producer for an NPR member station in Connecticut and produce an hour-long show about issues that matter to people in our community. After this visit to my grandparents and discussion with my family over the holidays, I started thinking that talking about genetics and Alzheimers would be a really important topic for us to discuss on our public radio show, as it's a deeply relevant and personal issue for so many people in our community.

So I'm starting to think about how to put together a discussion on this topic, and I was really interested to talk with some of you in the APOE4 positive community about your decision to get tested--something I at this point am still scared to do--and what that means for your life. At this point, I'd really like just chat with you guys a bit more--I'd really like to get some of your thoughts/perspectives as I plan a discussion on this topic.

Thank you, and hope to hear from you!
Carmen

[drae]

Carmen, what a great idea! And, welcome! I am relatively new here myself so I am not the one to contribute to your project but I certainly applaud it, and you, for tackling such an issue, important to so many of us. It seems to me now that there are ways to resist Alzheimer's disease we all need to do what we can to get the word out that there is hope, and there are things you can do to change your life to a better life. I deeply, deeply appreciate the people and information available to us here (these are lifelines!) and in so many other places, like books, blogs, Youtube. What a great platform you have. Welcome, again, and...

my best to you!
Drae <--- Newbie too

[SusanJ]

Hi Carmen, we've had many discussions about the pros and cons of testing. So, we put together a page, "Thinking about testing?", which leads you through a set of questions to help you think about the ramifications of knowing your status. It's at https://www.apoe4.info/wp/thinking-about-testing/, so that will be a good place to start.

Consider starting a new thread in "Our Stories", and ask for participants. You can find it by clicking on "ApoE4.Info / Board index" at the top left part of this page, just under the logo. Click on "Our Stories" and the "New Topic" button.