Just found out... And I am scared.

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Libertas
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Just found out... And I am scared.

Postby Libertas » Fri May 25, 2018 8:53 pm

I am 31 years old and I just found out through a test I did just one day for the whim of what interesting things I might read.... That I have the ε4 variant in the APOE gene. Of all of what it could be... I have this one.

I am just terrified. I can't imagine going like this whether it's 15 years from now or 25.. this finding has completely shattered me. I can't imagine losing my mind for lack of better words right now.. I don't know how to cope with this. I am sitting here thinking about my future plans in life and dreams and one day, kids... And I have trouble thinking I can even pretend that this isn't going to change everything. I am sorry for this sounds like a mad woman's rant but I really don't know where else to turn and I don't want to go talking to my family about this.

Help me please? This is devastating to me.

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slacker
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Re: Just found out... And I am scared.

Postby slacker » Sat May 26, 2018 4:57 am

Welcome Libertas. Many are overwhelmed when they learn about their ApoE4 status, and don't know what to do. Having ApoE4 increases one's risk of late onset Alzeheimer's; it is not a death sentence. We've had several young people such as yourself join us recently with similar responses to yours. Luckily you all have time on your side to make lifestyle changes than can protect cognition.

If you haven't seen it already, check out our Primer. It's loaded with information and is a great place to start.

You can also check out threads that have been started by your fellow members in their 30's; several state their age in the thread's subject, so they are easy to find in the "Our Stories" forum. There is strength in community. You can read what our more seasons members have offered them in support. We give you the same support and empathy as we all travel this path together.
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NF52
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Re: Just found out... And I am scared.

Postby NF52 » Sat May 26, 2018 6:23 am

Libertas wrote:I am 31 years old...I am sitting here thinking about my future plans in life and dreams and one day, kids... And I have trouble thinking I can even pretend that this isn't going to change everything. I am sorry for this sounds like a mad woman's rant but I really don't know where else to turn and I don't want to go talking to my family about this. Help me please? This is devastating to me.


Welcome, Libertas, from someone who is going to act as a virtual mom today, since I totally get not wanting to talk to your family about this--at least not yet. First some honest info from someone who is ApoE 4/4 and 66 and has just celebrated 38 years of marriage, with 3 great kids about your age, two grandchildren, a rewarding career, and still has enough brainpower to enjoy life:
You are not going to lose your mind in 15 or 25 years or even 30 years. It sounds like you have one copy of the ApoE 4 allele; probably the other one is an ApoE 3. That makes you what we call an Apoe 3/4. That means the impact of that one "4" is reduced; just like you could be walking around with one gene for red hair and if the other gene is for dark brown, you probably don't have Prince Harry's hair color.
ApoE 4 is a risk for mild cognitive impairment and late-onset Alzheimer's disease AFTER age 65. It's not like catching the flu, where you wake up one day with Alzheimer's. It a very slow process, and we know that exercise (not marathons, just regular exercise), getting a good night's sleep most nights, eating less junk food and more healthy food (think Mediterranean diet; some people go into more specialized diets), and limited alcohol, along with friends and a life that keeps your brain working is all going to extend the health of everything from your heart to your brains to your joints.

And so you can and should plan on kids, grandkids, a career in whatever you are working in or towards. All of it!

And here's the good news for when you're my age: You still will be at a relatively low risk having some memory-related difficulties. About 10% of people without ApoE 4 do get Alzheimer's by the time they are 85; and probably 50% of people with two copies of ApoE 4 don't get Alzheimer's. Age is a risk factor; the same way that age is a risk factor for heart disease, and cancer. But a 2017 analysis of 4 large cohorts of people followed for decades estimated that the lifetime risk for someone who is ApoE 3/4 is about 20-25% for people who right now are between 60 and 75. That's people like me, who were raised thinking that Wonderbread was healthy; that avocados were exotic, and that exercise was something the PE teachers didn't want girls to do.

I have a fair amount of family history with women with dementia. Not one of them lost her mind. They all were able to carry on conversations and tell great stories up until they died of something else, usually heart disease. They all lived at home with some help until a few months before their deaths--again due to heart disease or other issues, not the memory problems.

If you are feeling anxious; talk to us. We're here and we're ready to help. If you find you're not able to focus; talk to your doctor. You don't have to share why if you don't want. You may just want to ask for some short-term help with anxiety. We also have interns who are trained in coaching and functional medicine who can arrange sessions with you off-line. Just ask if you want to set that up. The first session is free; the next several are cheaper than a caramel macchiato.

Hugs to you sweetie. Life just got interesting; it didn't get derailed. I promise!
4/4 and still an optimist!

Starfish77
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Re: Just found out... And I am scared.

Postby Starfish77 » Sat May 26, 2018 11:53 am

Hello Libertas, our member NF52 expressed her thoughts so well. I would like to add a few. I'm an E4/E4 81 year old woman and I'm doing just fine. It has been almost five years since i found out from my 23andme results. Because of what I have learned and the changes I have made in my life, I am doing much better than if I had never known my status. Because of you age you have time to get yourself in the best health possible for you.

Today I'm repotting bromeliads and African violets and replacing a broken toilet seat. Not terribly exciting stuff, but the same things I probably would have been doing if I was not an E4 E/4. I'm having a good life and thankful to be here to enjoy a few more years.

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Re: Just found out... And I am scared.

Postby WillsMeme » Sun May 27, 2018 9:57 pm

Hi, Libertas. NF52 eloquently expressed what we all feel. Knowing you are 4/3 or 4/4 is not a death sentence— it’s a wake up call. I’ve known for decades that my 3 sisters and I are looking down the barrel of a loaded gun, so to speak. Our mom, both of her siblings and their mom all had dementia. I chose to develop what I jokingly called my Alzheimer’s Prevention Plan. Well, I’m not joking any more. When I read Dr. Bredesen’s book, I found an integrative medicine physician and added her suggestions to my toolkit. At your young age, you have plenty of time to fix your diet and add supplements, exercise, sleep, reduce stress, build cognitive reserve and enjoy a long and healthy life. I’m 74 and I’m still working and blowing away the memory tests despite being 3/4 and having a positive amyloid PET scan. Best of luck to you in your journey.
"Fortune favors the prepared mind." -- Louis Pasteur


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