Hello, I am a 53 year old female. I was adopted at birth. I did my DNA to find my birth family which I did accomplish. Not content I decided to do Promethease with out even knowing apoe4 existed. I did show up carrying Cystic Fibrosis on 23 so expected that, also had researched the platform so knew it was a weights and measures kind of thing. Turns out I am 3/4, bio father also tested he is 3/3 and the only one showing signs of some memory loss at 80. Mom has not tested, she is 83 no signs, half maternal sister tested 3/3. I have done my homework, thought maybe I should bet my kids tested. They are 31, and 32 almost 33. BOTH are 4/4 with at least 7 other "bads" on their either apoe or Alzheimers matrix. Both have at least one of the MTHFR mutaions, and one has both, although is heterozygous for both. Not even sure what to do. When it was me, eh I figured it out(changed diet, etc), came to terms and moved on.
but this is my kids. . I have told them, but they do not understand yet what it means, and luckily think I over react a lot, so have not researched it on their own yet. . I do not know how to proceed. I do not want to devistate them, scare them, or in the case of my youngest make her angry thinking I am over reacting. HELP please. Also means I have 5 grandkids who are at least heterozygous. ugh.
Thanks for any input.
New, need help with some reality.
Re: New, need help with some reality.
Welcome Katajha.
Unfortunately this is a situation where your adult children were tested without full INFORMED consent about what was being tested.
Very tricky. Shouldn't have been done in the first place but here you are having opened Pandora's box. I assume you arranged testing as you have access to their DNA information. That itself raises questions around appropriate boundaries.
Ethically, bottom line is that they are adults and have the right to make decisions that you might not agree with.
Luckily at early 30s its not critical, and certainly for your grandchildren worrying is a long way away.
I know you wanted help in convincing them to take notice but my advice is to back away.
Sorry.
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Unfortunately this is a situation where your adult children were tested without full INFORMED consent about what was being tested.
Very tricky. Shouldn't have been done in the first place but here you are having opened Pandora's box. I assume you arranged testing as you have access to their DNA information. That itself raises questions around appropriate boundaries.
Ethically, bottom line is that they are adults and have the right to make decisions that you might not agree with.
Luckily at early 30s its not critical, and certainly for your grandchildren worrying is a long way away.
I know you wanted help in convincing them to take notice but my advice is to back away.
Sorry.
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Re: New, need help with some reality.
Welcome Katajha! What a amazing journey you have been on. I can't imagine the experience of connecting with your birth parents at your age. Congratulations on finding them. I'd love to hear more about that if you ever want to share.
Many of us are struggling with how (or if) to get our children to care about their potentially risky genetics. My son learned of his status at a very young age; 18 years old by my sloppy revelation of my own status. I was so devastated to learn I was a 4/4 that I failed to comprehend that sharing that information was an unethical revelation of his status. He's 24 now. The knowledge has ultimately been positive. He'd been Dxed with CFS and multiple severe GI issues as a child. By the time he was ready to begin actively optimizing his health based upon his 3/4 status, he already had multiple biomarkers out-of-whack: very low Vitamin D, high homocysteine, etc. I'm not sure that he'd have had the opportunity to address that early had he not known of his ApoE status.
Coming to terms with genetic risk is a process. My son (like your children) didn't chose this journey. We must give them space to navigate this in their own way. My husband and I have come to the realization that the best thing we can do to influence him is to role model very healthy lifestyle choices. He's chosen to follow his father's career path and is building credentials to become a commercial airline pilot. We love that he MUST keep his FAA physical in order to fly He's now forced to take his health seriously. He's finally at the point where he occasionally wants to talk about diet, exercise, etc. Give your kids time and space to navigate this. Be the best role model that you can be in terms of your own health. My guess is that they'll come around to caring when they're ready.
Many of us are struggling with how (or if) to get our children to care about their potentially risky genetics. My son learned of his status at a very young age; 18 years old by my sloppy revelation of my own status. I was so devastated to learn I was a 4/4 that I failed to comprehend that sharing that information was an unethical revelation of his status. He's 24 now. The knowledge has ultimately been positive. He'd been Dxed with CFS and multiple severe GI issues as a child. By the time he was ready to begin actively optimizing his health based upon his 3/4 status, he already had multiple biomarkers out-of-whack: very low Vitamin D, high homocysteine, etc. I'm not sure that he'd have had the opportunity to address that early had he not known of his ApoE status.
Coming to terms with genetic risk is a process. My son (like your children) didn't chose this journey. We must give them space to navigate this in their own way. My husband and I have come to the realization that the best thing we can do to influence him is to role model very healthy lifestyle choices. He's chosen to follow his father's career path and is building credentials to become a commercial airline pilot. We love that he MUST keep his FAA physical in order to fly He's now forced to take his health seriously. He's finally at the point where he occasionally wants to talk about diet, exercise, etc. Give your kids time and space to navigate this. Be the best role model that you can be in terms of your own health. My guess is that they'll come around to caring when they're ready.
Re: New, need help with some reality.
Hello Katajha and welcome. I'm so glad you found your way here.
I just want to say, as a E4/4 mom with children and grandchildren, I hear your distress and understand it. I hope that you'll spend some time browsing thru our forum discussions; there is so much knowledge and experience to be found here, not to mention a sense of shared community. It helps to put things in perspective, I believe.
My view is that there is so much still unknown about how the interplay of our thousands of genes will ultimately play out. As a 4/4 in my mid 60's with MTHFR issues who didn't make the best lifestyle choices until 5 years ago, I am still in decent health and ok cognitively. While I do at times wish I'd known my status years earlier - hard to deny now that a healthy lifestyle can make a difference - I still can't say I regret living those years worry-free. Your children are still young; time is on their side to slowly digest the news if/when they're ready. And my opinion (and it is just that as I am a layperson) is that your grandchildren will have access to so many more interventions to stay healthy than we have at the moment. I feel very optimistic about that.
Please don't hesitate to continue sharing your thoughts with us along the way, Katajha...all the best
I just want to say, as a E4/4 mom with children and grandchildren, I hear your distress and understand it. I hope that you'll spend some time browsing thru our forum discussions; there is so much knowledge and experience to be found here, not to mention a sense of shared community. It helps to put things in perspective, I believe.
My view is that there is so much still unknown about how the interplay of our thousands of genes will ultimately play out. As a 4/4 in my mid 60's with MTHFR issues who didn't make the best lifestyle choices until 5 years ago, I am still in decent health and ok cognitively. While I do at times wish I'd known my status years earlier - hard to deny now that a healthy lifestyle can make a difference - I still can't say I regret living those years worry-free. Your children are still young; time is on their side to slowly digest the news if/when they're ready. And my opinion (and it is just that as I am a layperson) is that your grandchildren will have access to so many more interventions to stay healthy than we have at the moment. I feel very optimistic about that.
Please don't hesitate to continue sharing your thoughts with us along the way, Katajha...all the best
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Re: New, need help with some reality.
Katajha, hugs to you. These things are hard....
The decisions you've made so far are perfectly understandable in light of your love for your children.
I would say the best advice for now is this:
We are here for you.
G
The decisions you've made so far are perfectly understandable in light of your love for your children.
I would say the best advice for now is this:
There is absolutely no rush. Look around here, get to know the science a bit – when you're ready – and then you can take it from there.Juliegee wrote:Give your kids time and space to navigate this. Be the best role model that you can be in terms of your own health. My guess is that they'll come around to caring when they're ready.
We are here for you.
G
Re: New, need help with some reality.
Not sure how to reply with out the quotes, but NO they did give me permission. Where did you get the fact they did not. I had tested for cystic fibrosis. but thanks for the very very presumptive reply.Stavia wrote:Welcome Katajha.
Unfortunately this is a situation where your adult children were tested without full INFORMED consent about what was being tested.
Very tricky. Shouldn't have been done in the first place but here you are having opened Pandora's box. I assume you arranged testing as you have access to their DNA information. That itself raises questions around appropriate boundaries.
Ethically, bottom line is that they are adults and have the right to make decisions that you might not agree with.
Luckily at early 30s its not critical, and certainly for your grandchildren worrying is a long way away.
I know you wanted help in convincing them to take notice but my advice is to back away.
Sorry.
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Re: New, need help with some reality.
Thank you all that were not horribly judgmental. I will not be back here though. Having someone accuse me of something is not what I came here for.
Re: New, need help with some reality.
I apologise for upsetting you. I specifically said informed consent, meaning they understood what apoe4 was, its prognosis and that there is no medical treatments, before actively chosing and wanting to know their status. Your post suggests that they did not have ask to be tested for apoe4 fir the purpose of improving their chances and you are upset because they are not ready to apply interventions.
Most of us did not have this opportunity. Many of us might have chosen not to know if we were fully imformed what running our data thru Promethease would unearth.
I apologize again for upsetting you. But my stance that apoe4 should not be tested without full informed consent stands.
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Most of us did not have this opportunity. Many of us might have chosen not to know if we were fully imformed what running our data thru Promethease would unearth.
I apologize again for upsetting you. But my stance that apoe4 should not be tested without full informed consent stands.
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Re: New, need help with some reality.
I completely agree with Stavia. Please accept her apology. She is a working doc and understands the ethics of all this better than most docs that I have ever worked with. Hope you find peace in whatever way you choose to proceed. These are all good people here and are only giving you their opinion. Therefore the choices you make are entirely up to you. Good luck and I wish you and your children well.
Aloha,
Frank
Aloha,
Frank
Re: New, need help with some reality.
Thanks Frank. The issue for many of us is informed consent, which is not the same as consent without full understanding of the implications of a positive test. I don't think anyone should have to go thru the pain that I did finding out, completely unprepared, that I was 4/4.
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