Genetic counseling

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Eniluap
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Genetic counseling

Post by Eniluap »

I literally joined this forum today. I’m 29 years old, female, and I’ve already learned from 23andMe that I have 2 copies of APOE4. Both of my grandmothers had dementia, although I don’t know which type either of them had. 23andMe told me that I should see a genetic counselor to help me better understand the results. I thought someone from this forum could tell me whether it helps with alleviating anxiety. I’ve already made an appointment with a counselor
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floramaria
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Re: Genetic counseling

Post by floramaria »

Eniluap wrote: Wed Sep 25, 2024 3:43 pm I literally joined this forum today. I’m 29 years old, female, and I’ve already learned from 23andMe that I have 2 copies of APOE4. Both of my grandmothers had dementia, although I don’t know which type either of them had. 23andMe told me that I should see a genetic counselor to help me better understand the results. I thought someone from this forum could tell me whether it helps with alleviating anxiety. I’ve already made an appointment with a counselor
A warm welcome, Eniluap! Congratulations on being proactive in supporting yourself by signing up to see a genetic counselor and also by joining here on the Forums. I believe that seeing a genetic counselor will be helpful for alleviation anxiety, because that person will tell you many of the same thing you will find as you become more familiar with the information here at ApoE4.Info. For one thing, the ApoE4 allele only increases risk of Alzheimer's disease, but certainly having 2 copies, which many people here have, does not mean you are destined to have dementia. We have healthy, cognitively intact people in their 70's and 80's who have 2 copies of ApoE4. (I'm sure you'll be meeting some in various threads.) Another positive thing you have going for you is your youth. Even though it its totally understandable that this news has shaken you, something to take into account is that ApoE4 is not a factor in early onset Alzheimer's. In the many decades before ApoE4 would potentially have negative health impact, very promising research will continue to be done, and there will be more and more interventions that may entirely eliminate Alzheimer's Disease.

Meanwhile, there are things you can do to reduce the impact of your ApoE4 alleles. There are simple lifestyle considerations that will tilt the playing field in your favor. You want to be sure to eat a healthy diet, or healthy enough that you keep your blood sugar levels in a healthy range. Exercise is also important. So is sleep. Avoid toxins. Those are just a few of the factors you can address to help yourself live a long life in which you retain your health both physically and cognitively.

We have a wonderful introduction to understanding ApoE4 and what you can do to mitigate associated risks here in the Primer. As you learn more, I think you will feel more and more confident and less anxious about what impact your ApoE4 alleles will have on your life. If there are specific subjects that you want to learn more about, you can see what has already been posted on any topic by typing a word or phrase into the search bar, located just below your user name in the upper right hand corner of the screen.

This community is here to help and support you in any way we can. Feel free to ask questions.
Sending you a virtual hug~
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Re: Genetic counseling

Post by TheresaB »

floramaria wrote: Wed Sep 25, 2024 9:14 pm by floramaria » Wed Sep 25, 2024 9:14 pm
Eniluap wrote: Wed Sep 25, 2024 3:43 pm I literally joined this forum today. I’m 29 years old, female, and I’ve already learned from 23andMe that I have 2 copies of APOE4.
Welcome Eniluap.

I love Floramaria's welcome and advice to you. I would like to add that in addition to the Primer, you may also want to read Introduction to APOE4 from our ApoE4.info wiki. It provides a background on our allele and towards the end is a write-up on the importance of diet and lifestyle. At your age especially, so much of your future is in your hands.

I wish I had learned my status earlier in life. I learned 10 years ago, but making dietary and lifestyle changes has been a positive and empowering experience to me versus feeling helpless about the situation, because the situation is far from fatalistic. FYI, I'm a 4/4, about to turn 65, and doing well.
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Re: Genetic counseling

Post by rdpchef »

Eniluap wrote: Wed Sep 25, 2024 3:43 pm I literally joined this forum today. I’m 29 years old, female, and I’ve already learned from 23andMe that I have 2 copies of APOE4. Both of my grandmothers had dementia, although I don’t know which type either of them had. 23andMe told me that I should see a genetic counselor to help me better understand the results. I thought someone from this forum could tell me whether it helps with alleviating anxiety. I’ve already made an appointment with a counselor
Hi Eniluap,

I'm one of the welcoming interns. I'm so impressed by your courage to start learning as much as you can so quickly. You've already met some of our experienced members who've replied to you. I'm so glad that they reached out to you. I'll add a bit of my experience below so you will see that you are not alone.

I'm 4/4 and 61 years old. I found out I had two copies of Apoe4 about three years ago. Fortunately I was already working with a functional medicine doctor. Like you, I have grandparents and in my case, parents who have/had Alzheimer's or some form of Dementia.

There is a wealth of information on this forum so you are well ahead of the curve. As other mentioned, there are lifestyle modifications that can be made that set you up for success. Give yourself some grace and take tiny steps so you don't get overwhelmed. You have plenty of time.

Please come here with any and all of your questions No question is worth going unanswered. We all welcome you.

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Re: Genetic counseling

Post by Eniluap »

Thank you all for your encouraging words. Should I be careful about who I share this information with? I remember reading that APOE4 carriers could experience discrimination.
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Re: Genetic counseling

Post by floramaria »

Eniluap wrote: Thu Sep 26, 2024 10:22 am Thank you all for your encouraging words. Should I be careful about who I share this information with? I remember reading that APOE4 carriers could experience discrimination.
Hi Eniluap~
Some people advise not sharing this information with your doctor because you may not want it to become part of your permanent medical records. Insurance companies can refuse to issue long term care insurance to individuals who they believe are at higher risk of needing it because of their genetic status.
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Re: Genetic counseling

Post by Eniluap »

floramaria wrote: Thu Sep 26, 2024 10:44 am
Eniluap wrote: Thu Sep 26, 2024 10:22 am Thank you all for your encouraging words. Should I be careful about who I share this information with? I remember reading that APOE4 carriers could experience discrimination.
Hi Eniluap~
Some people advise not sharing this information with your doctor because you may not want it to become part of your permanent medical records. Insurance companies can refuse to issue long term care insurance to individuals who they believe are at higher risk of needing it because of their genetic status.
Are there any upsides to telling your doctor, e.g. personalized prevention strategies? Or are most doctors uneducated about that?
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Re: Genetic counseling

Post by floramaria »

Eniluap wrote: Thu Sep 26, 2024 11:51 am
floramaria wrote: Thu Sep 26, 2024 10:44 am
Eniluap wrote: Thu Sep 26, 2024 10:22 am Thank you all for your encouraging words. Should I be careful about who I share this information with? I remember reading that APOE4 carriers could experience discrimination.
Hi Eniluap~
Some people advise not sharing this information with your doctor because you may not want it to become part of your permanent medical records. Insurance companies can refuse to issue long term care insurance to individuals who they believe are at higher risk of needing it because of their genetic status.
Are there any upsides to telling your doctor, e.g. personalized prevention strategies? Or are most doctors uneducated about that?
I think many, if not most, doctors are not educated about ApoE4. With a Functional Medicine or Integrative Medicine doctor, there are better odds, but still no guarantee, that she or he would know about the health implications of ApoE4. Cardiologists often know about it because of vascular issues related to carrying ApoE4. In my own case, I have been willing to divulge my ApoE4 status to my doctors to explain certain concerns I have. ( The inflammatory effects of ApoE4 was my reason for seeking a prescription for low dose naltrexone, for example.) I knew that I would not be applying for long term care insurance because of the expense. Since you are young, I think it would be wise to preserve all options, which would mean not getting your ApoE4 status into your medical records.
FWIW, When I was seeing a Functional Medicine doctor who I trusted, I asked if I could tell him something that he would not put into my medical records. He agreed to that and took it my ApoE4 status into account while leaving it out of my records.
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Re: Genetic counseling

Post by NF52 »

Eniluap wrote: Thu Sep 26, 2024 10:22 am Thank you all for your encouraging words. Should I be careful about who I share this information with? I remember reading that APOE4 carriers could experience discrimination.
You are asking really thoughtful questions! Most people are still in the "What!!!??" stage, so I think it's safe to say that you have a big plus that's been found in ApoE 4/4s--high verbal intelligence from a young age!

That actually confers "cognitive resilience", meaning that your brain has lots of healthy synapses and storage capacity. In fact, I remember years ago hearing a researcher complain only somewhat facetiously, that "The problem with studying people with Apoe 4/4 is that their brains just stay healthy for years and years!"

Here's my take on the question of who to tell: Think about telling those people who care most about you, and who are most able to listen, ask questions and not jump to "you should do this thing that I read about."
This could be a partner, a sibling, a close friend or your parents, each of whom may have different feelings about learning this, since for family members it brings up the question of "Well, what am I then?"


It helps to think a bit about genetics: You inherited one copy of ApoE 4 from each parent. Unless they do 23&me or another test, you and they would only know that much. Odds are they are each ApoE 3/4 (one copy of ApoE3 and one of ApoE4 from each of their parents), since about 25% of people in the US and Europe have that combination. Approximately 75% have ApoE 3/3, and about 2% have ApoE 4/4 and 2-4% have either ApoE 2/2, 2/3 or 2/4. (Numbers are rounded for ease of thinking about them!)

If they are ApoE 3/4, and you have siblings, each of your siblings has a 25% chance of being ApoE 4/4 like you, a 25% chance of being ApoE 3/3 and a 50% chance of being ApoE 3/4. My husband is ApoE 3/3 and our three adult kids are ApoE 3/4. I learned that I was ApoE 4/4 when they 25 to 32, and held off telling them for a while, since all are active, healthy and not doing anything I thought was nuts! When I told them, they all were fine with the news, supportive of my being in clinical trials, and now are probably tired of hearing the latest Alzheimer’s research! None of my three siblings, all in their 70's has chosen to test, although one is screening for a clinical trial for people with normal cognition of an anti-tau drug. Bottom line: It's a personal decision to tell anyone, and you don't have to decide right away.

You might start a conversation by sharing that you've learned some interesting information about both how families can have a history of Alzheimer’s or other dementias and actually reduce their risk a lot through some things that are good for both brains and hearts. Since your parents are probably in their 50's to 60's, they might be interested to know they can reduce the risk of developing the dementia that a parent had. If they were open to hearing what you learned, you could share your news. I bet they would be very supportive! And you could all talk about what heart and brain health means to you, and what they hope their 60's and 70's and 80's looks like.

The best advice I heard recently at an Alzheimer's conference was "move more". Whether someone is sedentary, or hike mountain trails, that's probably good advice! Your parents may also connect your news with recent articles on the benefits of switching from ultra-processed foods or having alcohol and red meat less frequently, and a "rainbow" of veggies more frequently.

As for discrimination, here is an excerpt from a 2008 law that prohibits discrimination by health insurance companies based on genetic information when issuing policies: The Genetic Information Nondiscrimination Act (GINA)
GINA prohibits plans from collecting genetic information (including family medical history) from an individual prior to or in connection with enrollment in the plan, or at any time for underwriting purposes. Thus, under GINA, plans and issuers are generally prohibited from offering rewards in return for the provision of genetic information, including family medical history information collected as part of a Health Risk Assessment (HRA).
As floramaria suggested, if your current health doesn't depend on your doctor knowing this, then you're not harming yourself by holding off telling them. One of the ways you can possibly help yourself is to share that, based on your family history of dementia of an unknown type in a grandparent on each side, you would like a cholesterol panel done, if they don't already do that. People with ApoE 4/4 tend to have higher levels of LDL cholesterol (the "bad" type) and need to watch saturated fats, for example. I didn't realize that I had mediocre cholesterol numbers until I was in my 60's, and wish I had known earlier. {And if you're like one of my kids and haven't gotten around to getting a doctor after moving, this is a great chance to talk to your friends and coworkers and see who they like and why!}

A big takeaway is that at your age, all the things that you already know are healthy are the best strategies for people with ApoE 4/4! For the future, research is focusing on ApoE 4 more than even 5 years ago, with almost every funded grant using machine learning, large bio-repositories of stored blood and imaging, human induced pluripotent stem cells (i.e. stem cells created in the lab that mimic human brain cells) and genetically engineered mice to find out how to prevent ApoE 4 from being a risk for AD.

Your generation will be the first, in my opinion, to look at Alzheimer’s the way my generation looks at polio: A disease that was once deadly and frightening, and now is completely preventable.

Nancy
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Re: Genetic counseling

Post by Eniluap »

The truth of the matter is, I'm afraid that if I share my genetic information with insurance companies, they will assume that I am destined to develop Alzheimer's, and therefore treat me like an Alzheimer's patient. I'm afraid that the state or some other agency will step in and make me their ward, and I will lose the right to make any decisions for myself. Maybe I'm paranoid, I don't know. On the other hand, I want to get a headstart on this. I want some personalized guidance, which I can only get from an expert.
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