Parents took 23andMe test, one with 4/4

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chrisps1992
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Parents took 23andMe test, one with 4/4

Post by chrisps1992 »

I got my parents to both take 23andMe tests this year. I got the results back and saw that my father has two copies of the apoe4 gene. I am terrified, both for him and myself. I immediately scoured the web for all the information I could find and decided to look at their raw DNA data. From what I can tell, the apoe4 variant relies on 2 SNPs: rs7412 and rs429358. My mother is rs429358(T,T) and rs7412(C,C). My father is rs429358(C,C) rs7412(C,C). I don't know if my high school biology class serves me well or not, but does this mean that it is impossible for me to have the 4/4 variant since I will inherit an rs429358 T from my mother. Also, I don't want to tell my parents about this. My father is 61 and his mind seems normal to me. I understand the risk increases dramatically as time goes by after the age of 65 or so. I am beside myself with this information. I have always believed that Alzheimer's disease was one of the worst possible diseases. I don't want to tell him, but at the same time I want him to change his lifestyle to help reduce some of the risk factors. I've tried to get him to take better care of himself for a long time now with no avail. I feel like he would change if he knew this, but I don't want to terrify him with this information.
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MarcR
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Re: Parents took 23andMe test, one with 4/4

Post by MarcR »

chrisps1992 wrote:does this mean that it is impossible for me to have the 4/4 variant since I will inherit an rs429358 T from my mother.
Yes, you are a heterozygous carrier - ε3/ε4. Welcome to the club! :-)

Regarding your dilemma, I think you're right to think long and hard about the wisdom of telling your father. I think it's every person's right to choose not to know. If I were in your shoes, I would be inclined to open the door a bit and then to respect whatever your father decides to do. Assuming that you have the credentials associated with his 23andMe sample, you could handle it this way:
  1. Log in, open Settings, scroll down to Preferences, choose Change report suggestions, and set it to Ask me again later.
  2. Share the credentials with your father, and let him know that ancestry and health-related reports are available there if he is interested.
  3. If he subsequently mentions the APOE-ε4 bombshell, be prepared to share credible, actionable info with him. I like The End of Alzheimer's by Dr. Dale Bredesen.
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Re: Parents took 23andMe test, one with 4/4

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chrisps1992 wrote:I don't want to tell him, but at the same time I want him to change his lifestyle to help reduce some of the risk factors. I've tried to get him to take better care of himself for a long time now with no avail. I feel like he would change if he knew this, but I don't want to terrify him with this information.
Although for slightly different reasons, I understand your dilemma. Those of us who know we are 4/4 instantly learned, upon receiving our genetic results, that each of our parents and children all carry at least one copy of ApoE4. Deciding who to tell has been tough. I have opted not to tell my dad. Like you, I've tried unsuccessfully to get him to take better care of himself, and I made a judgment call that telling him will likely do more harm than good. Instead, I just try to sneak in brain health tips. I did tell my mom that I was at risk, but she already had 23andMe results (when they did not include ApoE in the report), and she said she was pretty sure she has an Alzheimer's gene. I was actually trying to keep her from running her results through Promethease, where she would find out for sure (since at the time, I was devastated by my status). However, for her, knowing has turned out to be a positive thing, and she is (to some degree) on this brain health journey with me. Everyone is different, and you may need to take some time to evaluate how your dad might respond -- and your mom too, since this will affect her. Tough decision and a tough secret to keep! Take your time; it's not an emergency.

I personally went through quite a grieving process. Some days I'm glad to know. Other days, not so much. My life will never be the same. This is both good and bad.

I like what MarcR suggested about being prepared to share credible, actionable information. I think having good information at hand would have helped me tremulously. Without it, I was hung up on terrifying statistics.
~Anna
4/4 but so much more
broiler_x
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Re: Parents took 23andMe test, one with 4/4

Post by broiler_x »

I would tell him immediately if it were me, because he still has time to make some changes and optimize his outcome. I was devastated when I found out I was 4/4, but I am also very glad to have found out so that I can make the changes to reduce the risks. I think you should tell him but also provide him resources so that he can make educated decisions on how to move forward (show him this website, give him Bredeson's book and give him links to the many optimistic youtube videos, etc.).
chrisps1992
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Re: Parents took 23andMe test, one with 4/4

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Thanks for the welcome. I don’t think I will tell them. I am already very anxious knowing I have one copy, I can’t imagine what he would feel like if he knew he had two copies. I do think that I might flat out tell him that I’ve seen his genetic risk factors and that it is paramount that he changes his lifestyle. He is not tech savvy, nor is he versed in genetics so I can safely assume he would never guess ApoE4 or Alzheimer’s.

I keep seeing “2-3 times as likely” and “10-12 times as likely” and it all seems so vague. I can’t seem to find a straight answer for the chances of us developing Alzheimer’s. At this point, I’ve convinced myself that I do not wish to persue diagnostic or prognitive information on the 4/4 variant anymore because I think it will upset me even more and I will just think about it anytime my father has a slight memory lapse or some minor cognitive hiccup. I already wish I didn’t know about his status. I do, however, want to know the outlook for people with 3/4. I guess I just want to know if the increased risk for me is enough to lose sleep over.
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Re: Parents took 23andMe test, one with 4/4

Post by srbogert »

Hello chrisps1992,
Welcome to the APOE4.info site. As Hamlet might have said "To tell or not to tell - That is the question". Several members have given you different opinions about telling your father... All are valid in their own way. Ultimately, you will have to choose a path based on the information you gather about APOE4, and your knowledge about your father. Group members understand the difficulty of this decision, and we are here to support you.

Regardless of how you handle your 4/4 father, it is important for you to be well informed about APOE so you can take care of yourself as a 3/4. A great place to start learning is the APOE4 Primer on this site. The Primer was written by Stavia who is one of the site's most frequent contributors, a physician, and 4/4 herself. She has written the primer to be as evidence based as possible, and clearly identifies the bits that are controversial or experimental in nature. Reading the primer is a quick way to come up to speed on this very complex and emotionally charged topic. A key point in the Primer is that your genetics are not destiny. Even the person who is 4/4 has a reasonable shot at avoiding or reducing cognitive decline if they take care of themselves.

As you spend more time on the site, you may also want to review the How To Guide. It will help you find the best ways to post, search, and navigate the site.
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Re: Parents took 23andMe test, one with 4/4

Post by mike »

Chrisps,

Welcome to this site! A very hard choice... My father is currently in late stages of AD. He doesn't know who he is, but knows there used to be more.. Frustration, Anger... He followed all the current advice to eat healthy and exercise, etc. to no avail. Look at this site and do your research. It is possible to slow/stop the progression of AD. That knowledge may affect your choice. I wish I had found this site 5 years ago, when he was just beginning to show symptoms...
Sonoma Mike
4/4
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