29 year old with newly identified 4/4

A primer for newbies and old pros alike.
Post Reply
Swil211
Contributor
Contributor
Posts: 4
Joined: Thu Mar 16, 2023 7:31 pm

29 year old with newly identified 4/4

Post by Swil211 »

Hi everyone,

I am a 29 year old female with an unremarkable medical history. My husband and I decided it would be fun to do 23andme a few weeks ago. When the results came back last week, I was shocked to find out I’m a 4/4.

There is no known family history of dementia or Alzheimer’s on either side of my family. Paternal grandfather turns 96 today and is fully “with it,” paternal grandmother died from complications related to mitral valve prolapse and tooth infection? in her 80s, maternal grandmother from colon cancer at 85, and maternal grandfather from lung cancer in his 50s. My mom is 65 and father is 72, neither showing signs of cognitive decline. All aunts/uncles/cousins are the same.

I guess my first red flag was that I’m 5’9” and weigh 120 lbs (low BMI) with total cholesterol of 224. That was quickly lowered to a normal range with one Brazil nut every other day.

While high cholesterol may run in my family, so do low blood pressure and low blood sugar although I’m not sure those two are genetic at all. We all have a high education level (most everyone including me are doctors) and are all athletes, some professional.

Finding out I’m a 4/4 has been a huge shock to me. In a way it was good so that I can be more conscious about what I feed my body. But I am devastated to think that I might not remember my husband one day. Ever since finding out, I’ve been convincing myself I already have Alzheimer’s LOL anytime I lose my keys I panic.

Does anyone know of any clinical trials for young homozygous ApoE4s without symptoms? Does anyone here live in the Houston, TX, area?

Thanks for your help!
Last edited by Swil211 on Mon Mar 20, 2023 5:12 am, edited 1 time in total.
User avatar
Tincup
Mod
Mod
Posts: 3558
Joined: Fri Aug 08, 2014 2:57 pm
Location: Front Range, CO

Re: 29 year old with newly identified 4/4

Post by Tincup »

Welcome Swil211! My initial thought is your family members likely have some SnP's that offset E4 risks. My 63 year old wife is 4/4 and cognitively well. The only Alz/dementia in her family is a grandmother who presented with it in her mid-90's.
Tincup
E3,E4
NF52
Support Team
Support Team
Posts: 2772
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: 29 year old with newly identified 4/4

Post by NF52 »

Swil211 wrote: Mon Mar 20, 2023 4:58 am Hi everyone,

I am a 29 year old female with an unremarkable medical history. My husband and I decided it would be fun to do 23andme a few weeks ago. When the results came back last week, I was shocked to find out I’m a 4/4.
...
Finding out I’m a 4/4 has been a huge shock to me. In a way it was good so that I can be more conscious about what I feed my body. But I am devastated to think that I might not remember my husband one day. Ever since finding out, I’ve been convincing myself I already have Alzheimer’s LOL anytime I lose my keys I panic.

Does anyone know of any clinical trials for young homozygous ApoE4s without symptoms? Does anyone here live in the Houston, TX, area?

Thanks for your help!
Hi and a virtual hug to a smart, athletic and curious doctor, from an almost 71 year old woman with ApoE 4/4 whose childhood dream was to be a doctor.

Please know that you can and should live a wonderful life, because the research in ApoE 4 is moving very fast. Clinical trials in non-pharmacological (lifestyle) approaches showing the enormous benefit of exercise of almost any kind and lifelong occupational and cognitive challenge. Trials in many different pharmacological approaches (anti-amyloid, anti-tau, anti-inflammatory, pro-synaptic health, etc) are rapidly improving given the advent of plasma and imaging tech that didn't exist even 10 years ago.

I don't know of any clinical trials for someone your age, but I do know of a great NIH-funded participant registry that would allow you to contribute to research: All of Us, an NIH-funded participant registry of people in the U.S. I'm in a clinical trial now and also participate on a research participant advisory board that seeks to improve access, transparency and benefits to all from these trials. We all do this for ourselves and our children and we all feel VERY optimistic.

Rapidly advancing tools in neuroimaging, human pluripotent stem cell research, computer modeling and deep machine learning, GWAS studies, preclinical research in genetically modified animals, means we now know that a vast amount of what happens in the lead-up to even the earliest signs of cognitive impairment. We know that disease prevention and disease-modifying treatments targeted to ApoE4 will greatly improve through deep understanding of the upstream modifiers of risk.

Part of why I know all of this is from the rich conversations on this forum. Another part is from participating as a Consumer Reviewer for academic research with M.Ds and Ph.D.s in neuroscience, biostatistics, bioethics on AD and TBI research and on a Research Participant Advisory Board with other smart, educated, resilience people in their 60's and 70's. My intellectual life is as rich and varied as it was 30 years ago when I got to work with dedicated doctors and rehab professional for school kids with TBI. You can plan on a similarly rich life!

Already the incidence of dementia has dropped dramatically in countries with increased education levels, improved air and water quality. The prevalence among "boomers" and those in their 80's and above is still high, but much of that is mixed dementia affected by factors we knew nothing about 20 years ago (vascular disease, the role of diabetes and effects from repeated concussive TBI high among them).

You've achieved an amazing amount in 29 years; enjoy using it for an amazing future!

Nancy
4/4 and still an optimist!
Swil211
Contributor
Contributor
Posts: 4
Joined: Thu Mar 16, 2023 7:31 pm

Re: 29 year old with newly identified 4/4

Post by Swil211 »

NF52 wrote: Mon Mar 20, 2023 6:11 am
Swil211 wrote: Mon Mar 20, 2023 4:58 am Hi everyone,

I am a 29 year old female with an unremarkable medical history. My husband and I decided it would be fun to do 23andme a few weeks ago. When the results came back last week, I was shocked to find out I’m a 4/4.
...
Finding out I’m a 4/4 has been a huge shock to me. In a way it was good so that I can be more conscious about what I feed my body. But I am devastated to think that I might not remember my husband one day. Ever since finding out, I’ve been convincing myself I already have Alzheimer’s LOL anytime I lose my keys I panic.

Does anyone know of any clinical trials for young homozygous ApoE4s without symptoms? Does anyone here live in the Houston, TX, area?

Thanks for your help!
Hi and a virtual hug to a smart, athletic and curious doctor, from an almost 71 year old woman with ApoE 4/4 whose childhood dream was to be a doctor.

Please know that you can and should live a wonderful life, because the research in ApoE 4 is moving very fast. Clinical trials in non-pharmacological (lifestyle) approaches showing the enormous benefit of exercise of almost any kind and lifelong occupational and cognitive challenge. Trials in many different pharmacological approaches (anti-amyloid, anti-tau, anti-inflammatory, pro-synaptic health, etc) are rapidly improving given the advent of plasma and imaging tech that didn't exist even 10 years ago.

I don't know of any clinical trials for someone your age, but I do know of a great NIH-funded participant registry that would allow you to contribute to research: All of Us, an NIH-funded participant registry of people in the U.S. I'm in a clinical trial now and also participate on a research participant advisory board that seeks to improve access, transparency and benefits to all from these trials. We all do this for ourselves and our children and we all feel VERY optimistic.

Rapidly advancing tools in neuroimaging, human pluripotent stem cell research, computer modeling and deep machine learning, GWAS studies, preclinical research in genetically modified animals, means we now know that a vast amount of what happens in the lead-up to even the earliest signs of cognitive impairment. We know that disease prevention and disease-modifying treatments targeted to ApoE4 will greatly improve through deep understanding of the upstream modifiers of risk.

Part of why I know all of this is from the rich conversations on this forum. Another part is from participating as a Consumer Reviewer for academic research with M.Ds and Ph.D.s in neuroscience, biostatistics, bioethics on AD and TBI research and on a Research Participant Advisory Board with other smart, educated, resilience people in their 60's and 70's. My intellectual life is as rich and varied as it was 30 years ago when I got to work with dedicated doctors and rehab professional for school kids with TBI. You can plan on a similarly rich life!

Already the incidence of dementia has dropped dramatically in countries with increased education levels, improved air and water quality. The prevalence among "boomers" and those in their 80's and above is still high, but much of that is mixed dementia affected by factors we knew nothing about 20 years ago (vascular disease, the role of diabetes and effects from repeated concussive TBI high among them).

You've achieved an amazing amount in 29 years; enjoy using it for an amazing future!

Nancy
Thanks, Nancy! If you hear of any trials for someone like me and you remember me, please reach out. I am very eager to use my genes to help find a cure to this awful disease, even if I am asymptomatic and it’s all experimental.

In the meantime, I plan to connect with a top neurologist here in Houston. Not sure if I want to see a genetic counselor just yet.
Last edited by Swil211 on Mon Mar 20, 2023 7:27 am, edited 1 time in total.
NF52
Support Team
Support Team
Posts: 2772
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: 29 year old with newly identified 4/4

Post by NF52 »

Swil211 wrote: Mon Mar 20, 2023 7:02 am Thanks, Nancy! If you hear of any trials for someone like me and you remember me, please reach out. I am very eager to use my genes to help find a cure to this awful disease, even if I am asymptomatic and it’s all experimental.

In the meantime, I plan to connect with a top neurologist here in Houston. Not sure if I want to see a genetic counselor just yet. While the Houston Medical Center is advanced in its medical research and care, unfortunately I don’t think a lot is geared toward healthy diets and supplements.
I won't forget you and will definitely reach out if I hear of anything! In the meantime, among a rich array of options, here's one I like, from Dr. Richard Isaacson, founder of the Alzheimer's Prevention Clinic at Weill Cornell Medicine/NY Presbyterian Precision Nutrition for Alzheimer’s Prevention in ApoE4 Carriers.

And since women are different than men (who knew?!), you may be interested in the
Women's Brain Initiative, also at Weill Cornell and directed by Dr. Lisa Mosconi, author of The XX Brain in 2020.

Nancy
4/4 and still an optimist!
User avatar
TheresaB
Mod
Mod
Posts: 1607
Joined: Wed Feb 03, 2016 9:46 am
Location: Front Range, CO

Re: 29 year old with newly identified 4/4

Post by TheresaB »

Swil211 wrote: Mon Mar 20, 2023 4:58 am I am a 29 year old female with an unremarkable medical history. My husband and I decided it would be fun to do 23andme a few weeks ago. When the results came back last week, I was shocked to find out I’m a 4/4.

There is no known family history of dementia or Alzheimer’s on either side of my family. Paternal grandfather turns 96 today and is fully “with it,” paternal grandmother died from complications related to mitral valve prolapse and tooth infection? in her 80s, maternal grandmother from colon cancer at 85, and maternal grandfather from lung cancer in his 50s. My mom is 65 and father is 72, neither showing signs of cognitive decline. All aunts/uncles/cousins are the same.

I guess my first red flag was that I’m 5’9” and weigh 120 lbs (low BMI) with total cholesterol of 224. That was quickly lowered to a normal range with one Brazil nut every other day.

While high cholesterol may run in my family, so do low blood pressure and low blood sugar although I’m not sure those two are genetic at all. We all have a high education level (most everyone including me are doctors) and are all athletes, some professional.

Finding out I’m a 4/4 has been a huge shock to me. In a way it was good so that I can be more conscious about what I feed my body. But I am devastated to think that I might not remember my husband one day. Ever since finding out, I’ve been convincing myself I already have Alzheimer’s LOL anytime I lose my keys I panic.
There’s more to ApoE4 than Alzheimer’s. I’ve repeatedly said I hate ApoE4 being referred to as “The Alzheimer’s Gene” because there’s so much more involved. It's really more an antagonistic pleiotropy gene (genes that enhance fitness early in life but diminish it in later life, so aging is not our friend). But ApoE4 is not a deterministic gene, there are lifestyle factors that can significantly counteract the deleterious effects of ApoE4.

I, too, had no family history of Alzheimer’s and was completely surprised when I found out I was a 4/4, about 9 years ago. But as I learned more and more about the health peculiarities (including high cholesterol) that ApoE4s are susceptible toward, my family’s health history now makes so much sense.

You can learn much about our shared allele and the health concerns we need to be mindful of by reading our primer under the Getting Started forum, PRIMER: An introduction to ApoE4, biochemistry, and possible prevention strategies and by reading the introduction and articles in our Main Page
wiki.jpg
You do not have the required permissions to view the files attached to this post.
-Theresa
ApoE 4/4
abalboa
Contributor
Contributor
Posts: 94
Joined: Fri Jan 14, 2022 8:39 am
Location: Texas
Contact:

Re: 29 year old with newly identified 4/4

Post by abalboa »

Swil211 wrote: Mon Mar 20, 2023 4:58 am Hi everyone,

I am a 29 year old female with an unremarkable medical history. My husband and I decided it would be fun to do 23andme a few weeks ago. When the results came back last week, I was shocked to find out I’m a 4/4.

There is no known family history of dementia or Alzheimer’s on either side of my family. Paternal grandfather turns 96 today and is fully “with it,” paternal grandmother died from complications related to mitral valve prolapse and tooth infection? in her 80s, maternal grandmother from colon cancer at 85, and maternal grandfather from lung cancer in his 50s. My mom is 65 and father is 72, neither showing signs of cognitive decline. All aunts/uncles/cousins are the same.

I guess my first red flag was that I’m 5’9” and weigh 120 lbs (low BMI) with total cholesterol of 224. That was quickly lowered to a normal range with one Brazil nut every other day.

While high cholesterol may run in my family, so do low blood pressure and low blood sugar although I’m not sure those two are genetic at all. We all have a high education level (most everyone including me are doctors) and are all athletes, some professional.

Finding out I’m a 4/4 has been a huge shock to me. In a way it was good so that I can be more conscious about what I feed my body. But I am devastated to think that I might not remember my husband one day. Ever since finding out, I’ve been convincing myself I already have Alzheimer’s LOL anytime I lose my keys I panic.

Does anyone know of any clinical trials for young homozygous ApoE4s without symptoms? Does anyone here live in the Houston, TX, area?

Thanks for your help!
Welcome Swil211! Thank you for joining our site and posting in our forum. I am happy to see you have already gotten some great information in reply to your post. This is a wonderful resource to share and receive information.

As a Support Team Intern, if you would like to explore the site in more detail, I can share several tools/resources to help you get the most out of your experience. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

If you are interested in learning more about other members check out Our Stories.

Additionally, if you have not yet shared your status with your family and might be considering it- this is a wonderful resource as it has some thoughtful perspectives on sharing with family and next steps. Thinking about testing

It sounds like you are already are implementing many of the healthy habits that help decrease the risks of developing AD. Knowing your status early in life and having the knowledge to make mindful choices can be such a blessing as we learn more and more about the impact of lifestyle and how it affects the way our genes express themselves. AD is not an unavoidable fate! And I also live here in the Houston area ( Spring/Conroe).

Again, I am so glad you joined our forum. I look forward to hearing from you in the future. Please feel free to reach out anytime.

Warmly,
Angie
Certified Functional Medicine Health Coach
APOE4 aware health coach
Certified Functional Medicine Health Coach-FMCA
RECODE 2.0 Certified Health Coach
APOE4 aware health coach
MoCA Certification
BS Human Nutrition
Swil211
Contributor
Contributor
Posts: 4
Joined: Thu Mar 16, 2023 7:31 pm

Re: 29 year old with newly identified 4/4

Post by Swil211 »

TheresaB wrote: Mon Mar 20, 2023 8:28 am
Swil211 wrote: Mon Mar 20, 2023 4:58 am I am a 29 year old female with an unremarkable medical history. My husband and I decided it would be fun to do 23andme a few weeks ago. When the results came back last week, I was shocked to find out I’m a 4/4.

There is no known family history of dementia or Alzheimer’s on either side of my family. Paternal grandfather turns 96 today and is fully “with it,” paternal grandmother died from complications related to mitral valve prolapse and tooth infection? in her 80s, maternal grandmother from colon cancer at 85, and maternal grandfather from lung cancer in his 50s. My mom is 65 and father is 72, neither showing signs of cognitive decline. All aunts/uncles/cousins are the same.

I guess my first red flag was that I’m 5’9” and weigh 120 lbs (low BMI) with total cholesterol of 224. That was quickly lowered to a normal range with one Brazil nut every other day.

While high cholesterol may run in my family, so do low blood pressure and low blood sugar although I’m not sure those two are genetic at all. We all have a high education level (most everyone including me are doctors) and are all athletes, some professional.

Finding out I’m a 4/4 has been a huge shock to me. In a way it was good so that I can be more conscious about what I feed my body. But I am devastated to think that I might not remember my husband one day. Ever since finding out, I’ve been convincing myself I already have Alzheimer’s LOL anytime I lose my keys I panic.
There’s more to ApoE4 than Alzheimer’s. I’ve repeatedly said I hate ApoE4 being referred to as “The Alzheimer’s Gene” because there’s so much more involved. It's really more an antagonistic pleiotropy gene (genes that enhance fitness early in life but diminish it in later life, so aging is not our friend). But ApoE4 is not a deterministic gene, there are lifestyle factors that can significantly counteract the deleterious effects of ApoE4.

I, too, had no family history of Alzheimer’s and was completely surprised when I found out I was a 4/4, about 9 years ago. But as I learned more and more about the health peculiarities (including high cholesterol) that ApoE4s are susceptible toward, my family’s health history now makes so much sense.

You can learn much about our shared allele and the health concerns we need to be mindful of by reading our primer under the Getting Started forum, PRIMER: An introduction to ApoE4, biochemistry, and possible prevention strategies and by reading the introduction and articles in our Main Page

wiki.jpg
Have you had a full panel to determine if you any protective SnPs or whatever a previous poster suggested?
User avatar
TheresaB
Mod
Mod
Posts: 1607
Joined: Wed Feb 03, 2016 9:46 am
Location: Front Range, CO

Re: 29 year old with newly identified 4/4

Post by TheresaB »

Swil211 wrote: Mon Mar 20, 2023 11:55 am Have you had a full panel to determine if you any protective SnPs or whatever a previous poster suggested?
I was tested in 2014 and have the raw data from 23andme to check on SnPs that are protective or not so protective when I learn about them.
-Theresa
ApoE 4/4
User avatar
gena
Contributor
Contributor
Posts: 15
Joined: Sun Dec 25, 2022 7:18 pm

Re: 29 year old with newly identified 4/4

Post by gena »

Swil211 wrote: Mon Mar 20, 2023 4:58 am Hi everyone,

I am a 29 year old female with an unremarkable medical history. My husband and I decided it would be fun to do 23andme a few weeks ago. When the results came back last week, I was shocked to find out I’m a 4/4.

There is no known family history of dementia or Alzheimer’s on either side of my family. Paternal grandfather turns 96 today and is fully “with it,” paternal grandmother died from complications related to mitral valve prolapse and tooth infection? in her 80s, maternal grandmother from colon cancer at 85, and maternal grandfather from lung cancer in his 50s. My mom is 65 and father is 72, neither showing signs of cognitive decline. All aunts/uncles/cousins are the same.

I guess my first red flag was that I’m 5’9” and weigh 120 lbs (low BMI) with total cholesterol of 224. That was quickly lowered to a normal range with one Brazil nut every other day.

While high cholesterol may run in my family, so do low blood pressure and low blood sugar although I’m not sure those two are genetic at all. We all have a high education level (most everyone including me are doctors) and are all athletes, some professional.

Finding out I’m a 4/4 has been a huge shock to me. In a way it was good so that I can be more conscious about what I feed my body. But I am devastated to think that I might not remember my husband one day. Ever since finding out, I’ve been convincing myself I already have Alzheimer’s LOL anytime I lose my keys I panic.

Does anyone know of any clinical trials for young homozygous ApoE4s without symptoms? Does anyone here live in the Houston, TX, area?

Thanks for your help!
Hi Swil211-I live in San Antonio and travel to Houston fairly often. My mother (3/3) is being treated for Alzheimer’s and vascular dementia at the Baylor College of Medicine Alzheimer’s and Memory Disorders Center in the Houston Medical Center. My mother’s more specific diagnosis in December led me to test myself, and though she is a 3/3, I am 3/4. There is a ton of information on this forum. I’m still working my way through it. One thing I’ve learned is that knowledge is power. You are learning about your body so early and can take advantage of this. There is a lot of positivity and action here. Your genes are not your destiny.
Gena 3/4
Post Reply