These stats sound horrible

[Karina52]

Since finding out my 4/4 status earlier this year, I have been on an emotional roller coaster. While I have moments of being ok, I am deeply disturbed and freaked out by the prospect of losing my sanity and the essence of ME. The statistics I found, initially were something like 60% of APOE4 had AD by age 85 but now I saw this study and it sounds very dismal. Being 66, it means time is NOT on my side. 91% and mean onset 68??
On the bright side, my mother is 3/4 and at 92 has a little forgetfulness but is definitely still with it.
Are the 4/4s among us really statistically this doomed?? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3726719/

[Kenny4/4]

The 68 year mean onset age seems a little low. I have heard 73 year mean onset age used more often.We 4/4's get it 5 years earlier on average than 3/4's and 10 years earlier than 3/3's. This exact symmetry of " years difference in onset" has always fascinated me as it is the beauty of large numbers showing in exact proportion an effect a gene has on a disease.
The 91% number is a very skewed as it comes from the study of a family and it's relatives that had a high prevalence of Alzheimer's begin with.
Several large population studies have been done, one in Minnesota and one in France come to mind and the results are 51% of males and 60% of females will have or have had Alzheimer's by age 85.
We also have higher cardiovascular and stroke risks (both ischemic and hemorragic).
Enjoy life as it is short no matter how long we live. Do what you can to stave off the disease and it's risks with exercise, mind stimulation, diet and living.

[Fiver]

Hi Karina. Yes, it’s an emotional roller coaster. It gets a bit easier, in my experience, once the shock wears off.

Remember that about half our risk comes from modifiable risk factors, which we can change. In the past, people would not have been aware of these, so we should be able to do a little better at least.

I sometimes find myself apologizing for what I suspect seems like “health nut” behavior to my family and friends. But given that - according to a recent study discussed in another thread - only 12% of American adults ate metabolically healthy....I’ve decided “why be normal”? We should give ourselves a little room to have ups and downs and to try to fend off our genes!

[DDorans]

I like you also found out last year that I was APOE 4/4 and have had my ups and downs emotionally. I am also a worrier so that doesn’t help. I have finally accepted that the internet is a dangerous place for me with so many studies throwing out different statistics some being very scary. I also think knowing my genetics has allowed me to follow some of the recommendations that might prevent or delay the onset of Alzheimer’s and who knows in the next 10 years there may be some treatment as there is a lot of research being done. I hope you find some sense of peace with all this. Feel free to contact me anytime if you want some moral support. I find this is such a great supportive website.

[NF52]

Since finding out my 4/4 status earlier this year, I have been on an emotional roller coaster. While I have moments of being ok, I am deeply disturbed and freaked out by the prospect of losing my sanity and the essence of ME. The statistics I found, initially were something like 60% of APOE4 had AD by age 85 but now I saw this study and it sounds very dismal. Being 66, it means time is NOT on my side. 91% and mean onset 68??
On the bright side, my mother is 3/4 and at 92 has a little forgetfulness but is definitely still with it.
Are the 4/4s among us really statistically this doomed?? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3726719/

Hi Karin,
Please don't take this article as being scientifically sound; it was published in 2013 but used data from 1993 and 1997 to make the claim about average age of onset of 68. (You can find that by looking that the citation numbers listed after those statements in the text associated with Figure One.) For someone in 2013 to use data from 1993 is like someone recommending that you have a 1993 Macintosh computer to be up to date.
Not only is the reference out of date, but it relies on information from 42 families. In 1993 we didn't have 23&me, and ApoE 4 testing would have been rare, and done mostly at places like the Florida branch of the Mayo Clinic (where one of the two authors was from.) People who took a loved one to the Mayo Clinic in 1993 (or years before that date of publication) would have been a) wealthy and b) concerned about a loved one with an early age of onset of AD.

Here's some current and better news: Researchers have created a human stem cell line from two individuals with ApoE 4/4 who are cognitively healthy: one age 75 and one age 86. Because they have those they can now study WHY that person has stayed healthy. Below is the link to the most recent success. . Generation and characterization of two human induced pluripotent stem cell (hiPSC) lines homozygous for the Apolipoprotein e4 (APOE4) risk variant—Alzheimer's disease (ASUi005-A) and healthy non-demented control (ASUi006-A)

So plan on living long enough to find out how to stay sharp to age 86, dear Karin. And by the way, Wales is a lovely country, from the bit of it I saw by bus and train and a brief stay in 2015.

[Anna]

Since finding out my 4/4 status earlier this year, I have been on an emotional roller coaster. While I have moments of being ok, I am deeply disturbed and freaked out by the prospect of losing my sanity and the essence of ME.

Karina52, I hear you. I was really thrown when I learned my 4/4 status 2 years ago by way of a Promethease report, which provided some particularly alarming statistics. What I have discovered since then is that the statistics vary wildly depending on the study, and some of the studies are just too small to be meaningful.

I agree with Fiver's perspective . . .

Remember that about half our risk comes from modifiable risk factors, which we can change. In the past, people would not have been aware of these, so we should be able to do a little better at least.

I bet that the stats are much more favorable for 4/4's who actively take steps to modify their risk factors. Also, ApoE4 is the ancestral gene; it helps to think of it as a mismatch with the modern world, not a defect.

The emotional roller coaster is tough. I'm still on it, but the ride is less wild and terrifying. I have found that when other aspects of my life are going well, I'm more optimistic about my future. When they are not (especially if the challenges are health-related), I'm more likely to slip into that state of feeling doomed. But it does, overall, get easier. Here are some things that have helped me pull through those moments of being "deeply disturbed": going for a walk, having coffee with a friend, watching a comedy, shopping for healthy food, reading up on some aspect of prevention, taking pictures of beautiful things (which seems to help me to focus on the present as well as seek beauty), practicing gratitude (literally taking time each day to contemplate the ways in which I am fortunate), and, of course, checking into this forum (We are not alone in this journey!).