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
, 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.