Unexpectedly found out I am a double APOE4

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Kaytizate
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Unexpectedly found out I am a double APOE4

Post by Kaytizate »

Hi everyone :)

I’m 35yrs old and decided to pay for the health data to go with a DNA test. There is some history of cancer in my family so I wanted to know if I had a breast cancer risk. I was really shocked when I saw that I have the highest risk of AD because I carry 2 of the APOE4 genes. We don’t have a history of dementia or AD on either side of my family so I didn’t expected to see this at all. It’s thrown me into a bit of a spin & im very upset.

It’s really nice that there is this forum to meet other people with the gene because when I Google APOE4 the statistics are just terrifying. In some ways I’m glad I know because I can try to live a good and healthy life. I’m just not sure how I will shake this terrible feeling though :(
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Re: Unexpectedly found out I am a double APOE4

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Kaytizate wrote: Thu Jun 02, 2022 5:56 am Hi everyone :)

I’m 35yrs old and decided to pay for the health data to go with a DNA test. There is some history of cancer in my family so I wanted to know if I had a breast cancer risk. I was really shocked when I saw that I have the highest risk of AD because I carry 2 of the APOE4 genes. We don’t have a history of dementia or AD on either side of my family so I didn’t expected to see this at all. It’s thrown me into a bit of a spin & im very upset.

It’s really nice that there is this forum to meet other people with the gene because when I Google APOE4 the statistics are just terrifying. In some ways I’m glad I know because I can try to live a good and healthy life. I’m just not sure how I will shake this terrible feeling though :(
Welcome, Kaytizate! It's both normal and healthy to feel shocked and upset at an unexpected and uncertain future genetic risk. Most of us also felt upset, sometimes lost or angry when we learned our genetic results--especially when we Googled to learn more! I'm here to assure you that it does get better, especially as you learn more and realize how much is under your control for many decades.

Statistics are only good when referring to millions of people--not you, with your very healthy family history and young age. You are right around the age of my three adult children, all of whom are ApoE 3/4. I don't worry about their risk because I know they have healthy lifestyles and decades to come of fast-moving research on prevention. And at age 70 with ApoE 4/4, I also know that I do really well on a whole array of memory, learning, reasoning, and speed of processing tests as a participant in clinical trials of healthy people. So the estimate I read that I would have a diagnosis of Alzheimer's by age 68 (which I still come across) was unhelpful, to say the least!

When you look at articles, especially those that have references from 10 or 20 years ago, remember that the people they studied were born in the 1920's or so, who grew up in the Depression and WWII and often lived with early life deprivation, large families, air, water and soil pollution and poor food quality. Not to mention high levels of smoking (or second-hand smoke) from young ages, and for women, lack of access to cardiac health monitoring or hormone replacement therapy after menopause.

Researchers in the 1990's and early 2000's were estimating risks based on people who showed up at memory clinics with dementia--not on the broader population of healthy people. That's like estimating the risk of a car accident by looking at the age of the drivers in car accidents; it might tell you than younger drivers overall have more accidents, but won't tell you anything about the risk of a particular young driver.

The good news is that you didn't inherit a strong breast cancer risk gene and it's great news that your family has no history of dementia. Scientists now know that other genes and our environment can act to ramp up or down the risk of any one gene. In your family, you may have lots of genes dialing down risk!

According to a 2017 meta-analysis of three population groups followed for decades (two in the US; one in Rotterdam) and a fourth group of people followed by a US study of families with AD history came up with an estimate of the lifetime risk of a diagnosis of either Mild Cognitive Impairment or Alzheimer's dementia to age 85, the current life expectancy in the US for adults. Here's what they predict--again for people your parents' generation, not yours:
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2).
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts. So while you might have seen articles that say you have 2 to 3 times the risk of AD, that's starting from a baseline risk of about 10% for people with ApoE 3/3, which you would probably assume is no risk. What you know now is that someone my age with one copy of ApoE 4 (which is about 25% of the population of the US and Europe) has about a 75-80% chance of dying from something other than Alzheimer's. Alzheimer's is not an on/off switch. It's more like the very slow result of decades of small changes--most of which are not caused by ApoE4.

You literally have decades to build up cognitive reserves, maintain a healthy lifestyle and watch while numerous promising research ideas lead to likely several breakthrough approaches for prevention, even in people with higher risk than you have.

Enjoy browsing the forum, with some resources to help you find your way:

The Primer is written by Stavia, a practicing M.D. with ApoE4/4. It's a great place to see some strategies that you can consider--and she also recommends not trying to re-tool your entire life at once!

The How-To Guide shows how to quote members (use the " icon in the upper right of any post) so they get an email notification of your post. It also shows how to use the Search function for topics, and how to subscribe to topics of interest.

Here's a link pulled from our Wiki on Research, with a 2018 article on strategies for LOAD prevention in ApoE 4 carriers from Dr. Richard Isaacson, the Director of the Alzheimer's Prevention Program at Cornell Weill Medical Center in NYC: Clinical Application of APOE in Alzheimer’s Prevention: A Precision Medicine Approach Here's his top recommendation from the article:

Physical activity
A systematic review of 16 prospective studies concluded that physical activity decreased the risk of developing AD by 45%
Physically active ε4 carriers had an OR [odds ratio risk of Alzheimer's] of 2.30 and sedentary ε4 carriers had an OR of 5.53
Aerobic activity was associated with greater cognitive performance for ε4 carriers compared to non-carriers.
..The findings also suggest that physical activity may prevent Aβ accumulation that occurs in the brains of ε4 carriers before clinical symptoms of AD even become apparent
Keep reading and asking questions and sharing what you find helpful; we are all on a mission to create new paths for ourselves.

Warmly,
Nancy
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Re: Unexpectedly found out I am a double APOE4

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Kaytizate wrote: Thu Jun 02, 2022 5:56 am
It’s really nice that there is this forum to meet other people with the gene because when I Google APOE4 the statistics are just terrifying. In some ways I’m glad I know because I can try to live a good and healthy life. I’m just not sure how I will shake this terrible feeling though :(
I thought I'd cut and paste my response to another person who asked how a person doesn't define themselves by their APOE4 status. From my response:
Yes, being ApoEε4 positive is an identity that I carry that with me every single day. It’s my strength. It’s my motivation to make good lifestyle choices. I've written about it in Christmas letters, because it's a happy story - there are things that can be done!

It's just genetics. How genes are expressed depend heavily on lifestyle influencers.

I am eternally grateful that I live in an era where we know much about this allele that I feel my health is in my hands. I’m not blind to the issues my genetics predisposes me. But I have choices, and I find that empowering, I’m not inevitably doomed. I'm also not perfect, when I make a mistake, I try not to be critical of myself I just get back to trying to do the best I can.

I’m grateful I learned my status years ago and was able to nip negative health patterns in the bud before, hopefully, permanent damage occurred.

Genes are not destiny, especially ApoEε4. There are 4/4s who live healthy, long, mentally clear lives. Alzheimer’s is not determined by APOE status, we’re just at higher risk. Dr Dale Bredesen has said Alzheimer’s should be a rare disease. He means that for all everyone, not once has he said except for ApoEε4s. I've often said I'd rather be an insulin sensitive 4/4 than an insulin resistant 3/3.

There are many influencers that tip the scale towards Alzheimer’s and everyone has control over most of those influencers. Yes, that's a lot of spinning plates that can be overwhelming at first, but it gets easier with time. Yes, as 4s we cannot afford a laissez faire attitude, we must have focus and intention. It takes dedication, but it’s doable.

I guess I don't feel bad because I'm doing something about it. If I go down, I'm going down kicking and screaming.

And when another person wrote, "Ever since I discovered my apoe3/4 status, I feel as if therès a shadow hanging over me and I can't get the fear of alzheimers out of my mind. think about it every day."

Here's what I wrote to that person:
The ApoEε4 allele is not a deterministic gene. It is a strong risk factor for sporadic Alzheimer’s, but it's not deterministic. It doesn’t mean you will, without a doubt, get Alzheimer's. ANYONE, ApoE 2/2, 2/3, 3/3, 3/4, 4/4 can get Alzheimer's, that’s why it’s called sporadic Alzheimer’s. 4’s are just at greater risk, a risk that is GREATLY influenced by lifestyle factors.

I hate it when people refer to ApoE4 as "the Alzheimer's gene" that is such a misnomer. It's a "you better be careful with lifestyle choices for healthy aging" gene.

According to Genome-Wide Association Study of Brain Connectivity Changes for Alzheimer’s Disease from Jan 2020, the effects of ApoE4 accounts for only 27.3% of the overall disease heritability.

ApoE4 isn’t the number one risk factor for Alzheimer’s, aging is, and that’s a freeing thought because while we can’t control our genes, we can all control how we age! There’s so much information out there about aging well! You’ve elected to be a member here since 2018 so by now you HAD to have read a number of these strategies.

A shadow can only be cast by light. We all have choices. You can turn your back on the light and focus on the dark shadow, or you can face the light to enjoy its warmth and brilliance.

You should not feel such dread over something you have no control over, something you share with millions of others. You should feel great empowerment over things you can control.
-Theresa
ApoE 4/4
Kaytizate
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Re: Unexpectedly found out I am a double APOE4

Post by Kaytizate »

Nancy & Theresa.. thank you both so much for your replies! I’m sorry I realised that I forgot to sign off with my real name, which is Kate :)

Nancy, I cried when I read your reply and when I showed it to my partner he was the same. I just felt such a sense of relief about what felt like such a terrible situation. You really offered us a different perspective on all the statistics & a hope that a healthy lifestyle will offset the risk. I have been reading the primer and I just bought Dr Bredesen’s book from 2020. I already exercise a lot and have been on and off a keto diet for the last 6 years. So I have already made some positive changes without realising it! I am very glad that you are so healthy and well at age 70 with 4/4 and I hope that your good health continues. I just want to say thank you again for taking the time to send me such a long and thoughtful reply. It really made such a difference to me and the darkness I have been feeling these last few days.

Theresa, thank you for sharing with me your replies to others who seem to have been feeling a bit down about being 4/4. This also really perked me up and made rethink the statistics! I was sitting at the dinner table with my children last night (aged 3 & 10) and I felt like I was already mourning my life. I’ve snapped out of it now because I realised it’s so stupid to think like that because I have to enjoy life as it comes!

Looking forward I feel glad now that I know and can make changes to my life. I feel sad for my parents who are in their late 60’s & they must each be a carrier of at least one E4. They are not terribly unhealthy but they are also not very healthy. I won’t share this news with them because I don’t think they would want to know about it at this stage. I feel as though I should tell my siblings so that they can both make lifestyle changes but again I don’t feel like I should. I think if the tables were turned & they did that to me I would probably feel very angry. If anyone has some advice on this or if there is already a thread on it please point me in the right direction :)
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Re: Unexpectedly found out I am a double APOE4

Post by dewey »

[/quote]Looking forward I feel glad now that I know and can make changes to my life. I feel sad for my parents who are in their late 60’s & they must each be a carrier of at least one E4. They are not terribly unhealthy but they are also not very healthy. I won’t share this news with them because I don’t think they would want to know about it at this stage. I feel as though I should tell my siblings so that they can both make lifestyle changes but again I don’t feel like I should. I think if the tables were turned & they did that to me I would probably feel very angry. If anyone has some advice on this or if there is already a thread on it please point me in the right direction :)
[/quote]

First, I want to say it is great news that you found out so young. I wish I had known at your age. You have so much opportunity to protect yourself!

I am adopted and did ask my biological sister if she would choose to run her DNA to find health risks ... and she said no. So, I didn't tell her. I would ask your siblings hypothetically if they would want to know something like this. Present it in a way that won't be obvious that it's about you (and them). Personally, I would want to know (as stated above) which is how I found out. I opted to check my DNA specifically for this info. But, many people don't even know what APOE is. And, knowing can change your siblings' lives for the better... as knowing can for you. So, I would feel a bit guilty to not at least present the hypothetical situation to see how they respond. As a side note, I'm 56. Very close to your parents' age. There's a lot they can do to help their outcome. So, personally, I would ask them hypothetically too. Just my thoughts!!
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Re: Unexpectedly found out I am a double APOE4

Post by NF52 »

Hi Dewey,

Thank you for your kind reply to kaytizate. I've copied your post with a minor edit so her quote appears in a text box and she receives a notification of your reply. The easy way to do that is to start with the post you want to quote and click on the quotation mark icon in the upper right. That brings the entire post over to a posting/editing page in a text box for you to add your reply.
kaytizate wrote:Looking forward I feel glad now that I know and can make changes to my life. I feel sad for my parents who are in their late 60’s & they must each be a carrier of at least one E4. They are not terribly unhealthy but they are also not very healthy. I won’t share this news with them because I don’t think they would want to know about it at this stage. I feel as though I should tell my siblings so that they can both make lifestyle changes but again I don’t feel like I should. I think if the tables were turned & they did that to me I would probably feel very angry. If anyone has some advice on this or if there is already a thread on it please point me in the right direction :)
dewey wrote: Sat Jun 04, 2022 11:11 am First, I want to say it is great news that you found out so young. I wish I had known at your age. You have so much opportunity to protect yourself!

I am adopted and did ask my biological sister if she would choose to run her DNA to find health risks ... and she said no. So, I didn't tell her. I would ask your siblings hypothetically if they would want to know something like this. Present it in a way that won't be obvious that it's about you (and them). Personally, I would want to know (as stated above) which is how I found out. I opted to check my DNA specifically for this info. But, many people don't even know what APOE is. And, knowing can change your siblings' lives for the better... as knowing can for you. So, I would feel a bit guilty to not at least present the hypothetical situation to see how they respond. As a side note, I'm 56. Very close to your parents' age. There's a lot they can do to help their outcome. So, personally, I would ask them hypothetically too. Just my thoughts!!
4/4 and still an optimist!
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Re: Unexpectedly found out I am a double APOE4

Post by mike »

Kaytizate wrote: Thu Jun 02, 2022 5:56 am I was really shocked when I saw that I have the highest risk of AD because I carry 2 of the APOE4 genes. We don’t have a history of dementia or AD on either side of my family so I didn’t expected to see this at all. It’s thrown me into a bit of a spin & im very upset.
Kate, welcome from another 4/4, and while I'm not healthy at 62, my brain is. Nancy mentioned it, but I would like to emphasize that recent research is showing remarkable promise. Much of AD is the result of poor Life Style, which is why many non ApoE4 carriers still get AD. On the other hand, there is a good chunk that is also genetic. For many decades, AD research was hitting a wall, but now there are a number of VERY promising stuff going through clinical trials that likely/maybe/could cure the ApoE4 genetic part. I'm hopeful that through good life style choices I can put off AD long enough that my 4/4 status will no longer be an issue.

Also, I agree that if your parents are not already showing signs of AD, then there is still time for intervention. My dad died of AD...It was not pretty. I wish I had known when he was first diagnosed MCI, what I and Science know now.

Also, there is still stigma with AD, and it is fine not give your real name if it makes you uncomfortable.
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Re: Unexpectedly found out I am a double APOE4

Post by floramaria »

mike wrote: Tue Jun 07, 2022 11:45 am My dad died of AD...It was not pretty. I wish I had known when he was first diagnosed MCI, what I and Science know now.
Here, Here! If what we and Science know now had been available back then, so much suffering could have been avoided. While I certainly my have my complaints about certain aspects of Now, it is good to be reminded of how fortunate I am to be living in this time, where my chances of never developing AD (like generations of women in my family) seem good. By the time my mom was my age, she was already on a steep decline. Had the information been available, she’d have been all in on lifestyle changes. She was always very interested in being as healthy as possible; I ate a lot of Brewer’s yeast as a child! Unfortunately, the “healthy” lifestyle advice she chose to follow was Pritikin. Very low fat and lots of whole grains.
Was probably not the best for her.
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Re: Unexpectedly found out I am a double APOE4

Post by ktg000 »

Hi Kate, another Kate here 😊, and also 4/4. I found out my status too when I was trying to find out if I had a brca mutation. I realised I’d been falsely reassured when I read the small print of the 23andme brca testing, so I paid for testing privately for full brca testing in a clinical genetics lab and do actually have a brca2 mutation. Hopefully this is highly unlikely to happen to you too but maybe discuss your family history with the doctor and decide where to go from there. My family history was my mom who had ovarian cancer at 46 but because she was the only family member I didn’t qualify for testing on the NHS.
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Re: Unexpectedly found out I am a double APOE4

Post by NF52 »

kaytizate wrote:
ktg000 wrote: Wed Jun 22, 2022 4:16 pm Hi Kate, another Kate here 😊, and also 4/4. I found out my status too when I was trying to find out if I had a brca mutation. I realised I’d been falsely reassured when I read the small print of the 23andme brca testing, so I paid for testing privately for full brca testing in a clinical genetics lab and do actually have a brca2 mutation. Hopefully this is highly unlikely to happen to you too but maybe discuss your family history with the doctor and decide where to go from there. My family history was my mom who had ovarian cancer at 46 but because she was the only family member I didn’t qualify for testing on the NHS.
Hi Kate and Kate!

I used the quotation icon in Kaytizate/Kate's post to have our system send an automated email of ktg000/Kate's helpful reply. Hope two strong women named Kate continue to feel empowered!
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