Thoughts on Disclosure (Who have you told?)

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Anna
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Thoughts on Disclosure (Who have you told?)

Postby Anna » Mon Feb 26, 2018 8:45 pm

I would love to have a discussion about disclosure of ApoE4 status. There are clearly significant downsides to disclosure: impact on family members (who may not want to know their genetic risk), implications for insurance (medical as well as long-term care), concerns about employability, fear of being viewed differently, etc. But I suspect that -- at least for some of us -- there is also a downside to staying too quiet. So I'm wondering (and hoping it will be useful for others to hear) . . . Who have you told, and who have you not told? What was your thought process in making these decisions? Has disclosing or not disclosing caused any difficulties? Other thoughts?

When I first learned that I was 4/4, I decided to play it safe and share as little as possible. I told my husband that my Promethease report showed "Alzheimer's risk," not exactly big news since there is family history. But then the news started to sink in for me. Let's just say I was having trouble containing my grief! So I shared with him -- and eventually my "kids" (in quotes because they aren't exactly kids anymore) -- that I inherited risk from both sides, still keeping it vague, figuring that if they want to know more, they can ask. They didn't. I also told my mom and sister (who were awaiting their 23andMe results) mainly to steer them away from checking ApoE status. I also told my functional medicine doctor, making her promise not to put it in my record. But it's been well over a year now, and I haven't told anyone else (except of course this group, incognito). And it feels like a HUGE SECRET! Not to mention, a mightly lonely experience. Thank goodness for this forum! Generally, I like the idea of living authentically, but this feels so complicated!
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Re: Thoughts on Disclosure? (Who have you told?)

Postby dfmcapecod » Tue Feb 27, 2018 11:26 am

We are cracking the code and so close to some incredible breakthroughs in science and health, but it needs to be everyones choice about how they leverage their genetic data.

I do not believe there are not enough laws protecting privacy in this space yet, which is unfortunate because the more we share, participate in research, expose our data, compare notes and assist in the cure, the faster humanity will get there.

We need to change that in my opinion. I for one have shared it with my family and some co-workers. It doesn't change much, but once in a while someone remembers and they start connecting the dots. Or it encourages them to also get their genome read, which gets us another dataset closer. That's what this forum does, connect more dots for more of us, and we all have our own mini-science domains, some more rigorous than others, that we can glean learnings and feedback from to return to this. Some of the Dr's here can then get that information and feedback into research teams scattered throughout the globe.

I'm surprised honestly with how little networking seems to happen, again it's because people are timid about 'accepting' this, especially since it's also "very directive" and not conclusive yet. But I'm going to contribute, become active, participate and be more vocal about it, because there is enough brain & computing power and connectivity now that we shouldn't have but a few more years before we figure this out.

I find that it gets a bit religious for people, older folks in particular seem to want to have less to do with this. They want to believe in fate more, more in someone other than themselves being in control of their lives. The more scientific your approach on life, and your friends around you, the more they take this on as troubleshooting a problem, not as morbidity or negativity. That's how I look at it. We have a biological or chemistry problem, and we're very close to identifying the solution.

Incremental progress. We'll get there.
DM
ε4/ε4

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Re: Thoughts on Disclosure? (Who have you told?)

Postby shacherry » Tue Feb 27, 2018 1:03 pm

This is why this organization is a game changer for me. It gets very lonely, no one to bounce ideas off of and able to understand the complex science.

Even after I drew pictures of my mother and father and explained in the drawing how I inherited one copy of the apoe3 gene from my mother and one copy of the apoe4 gene from my father gifted accountant my husband he couldn’t follow along with my curious excitement.
Last edited by shacherry on Tue Feb 27, 2018 4:25 pm, edited 1 time in total.
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Re: Thoughts on Disclosure? (Who have you told?)

Postby ncjlhp » Tue Feb 27, 2018 2:12 pm

I have told only my brothers and sister the full disclosure of my APEO4/APEO2 status. We have such a strong maternal family history of this disease and my mother had the worst and longest clinical course among my family members ( grandmother and great grandmother). I want my sibs to take care of themselves and knowing their personal status might help that. I do worry if I tell my health care providers that I will be labeled in such a way that I won't be able to get insurance or have some other consequence, even though I have no sign of any cognitive impairment whatever. My husband just knows of the family history and I am not sure why I haven't disclosed more to him. Maybe because I really don't know any more than I did with the family history- this gene is no surprise to me. I will tell him more when I figure some things out about diet, supplements and lifestyle changes. l
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Re: Thoughts on Disclosure? (Who have you told?)

Postby Sara » Tue Feb 27, 2018 5:01 pm

Hi dfmcapecod and welcome to the apoe4.info website! Congratulations on having the courage to share your status. You make a strong case on the side of disclosure and openness about your status which I respect. I also agree with you that the more we look to forces outside of ourselves and at fate, the less likely we are to take the necessary actions to side-step that fate - and lastly, that to some extent - this phenomenon may be age related. As you find your way around this site please visit our Primer which is a good place to get started.
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Re: Thoughts on Disclosure? (Who have you told?)

Postby CoachDD » Tue Feb 27, 2018 7:23 pm

I am so happy you posted this question - it is quite timely for me. I have not formally introduced myself on the welcome page yet (I will do that soon), but here is my clinical status: I am 50 years young, 3/4 with MTHFR (C677T C;T and A1298C A;C) gene variations (among others) with reactivated EBV and high levels of lead toxicity. I have dealt with severe, chronic insomnia for several years - so much so that I was forced to leave my 25+ year corporate career in 2017.

I just recently told my husband some general info - but to be blunt, he does NOT understand the gravity of this situation. Since I've been dealing with significant issues (lack of energy, fatigue, brain fog, etc.) for quite some time now, he's convinced that I'm just depressed and need to exercise and get out more - and I thought so too, until recently. He's never been a caregiver/nurturer, so I've learned to look elsewhere for this type of support (or a shoulder to cry on). My parents are deceased and every one of my 4 (older) siblings have multiple health issues. . . I won't go into detail here, but it's pretty obvious that many of them will test positive even though no one in my family has been diagnosed with AD (technically, including me). I am close to one of my sisters, but she's dealing with health issues of her own and I am fearful what this news will do to her.

I am currently in the process of seeking out a neuro/psychologist/psychiatrist - trying to find one that is up on the latest advancements, which is not easy to do. I did reach out to MPI Cognition (Bredesen) and waiting to hear back from them. If anyone is in the Northeast Region (US), I'd be interested in any recommendations you may have!

Considering my situation (homebound most days), I am also concerned about becoming isolated - I know the importance of maintaining an active social life. We do entertain - probably more than average, but there are definitely times that it takes all my energy to do so. I had close "friends" at work (we all worked remotely), but since I left, we haven't kept in touch. My two "best" girlfriends live far away so it's not often that I spend time with them, and I'm sad to report that we don't talk as often as I would hope to. Much of this is because I haven't been in a good place for a long time and feel like I am just complaining every time we do talk - they are probably tired of hearing it. I do think that if I disclosed this information, they'd both be on the first plane/train here! There are others in our church community I can probably reach out to, but I'm not ready to do that yet.

So as of right now, I don't have anyone to talk with about this. . . I am very grateful to have this forum.

In regards to privacy/protection, I recently searched this and there is a law in place (US): http://ginahelp.org/

And here's an article on the "loopholes": https://www.theatlantic.com/health/arch ... na/519216/

I haven't dug deep into this, so I'd love to hear from anyone who has.

Thanks for listening! ")
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Re: Thoughts on Disclosure? (Who have you told?)

Postby Sara » Tue Feb 27, 2018 9:52 pm

Welcome CoachDD to the apoe4.info website and thank you for sharing your story. This is an excellent place to share information and ask questions. One of our resources for new members is the Primer. It is difficult but not uncommon to have a spouse who doesn't understand. You are fortunate to have such good friends and a supportive community surrounding you. Hearing that you are home bound you might also want to consider tele-health coaching. There are several Functional Medicine and Bredesen trained health coaches that support this website that might be a good fit for your situation, particularly once you are able to locate a physician.
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Anna
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Re: Thoughts on Disclosure? (Who have you told?)

Postby Anna » Tue Feb 27, 2018 9:54 pm

dfmcapecod wrote:the more we share, participate in research, expose our data, compare notes and assist in the cure, the faster humanity will get there.

Dfmcapecod, I couldn't agree more! I read that 23andMe is not currently pursuing ApoE research. I don't know why or if this is still true, but I was definitely disappointed to read this.

shacherry wrote:This is why this organization is a game changer for me. It gets very lonely, no one to bounce ideas off of and able to understand the complex science.

Shacherry, it is a game changer for me too! My husband still does not like discussing it and is definitely not ready to think of it as an interesting topic. I have to remind myself that he did not ask to learn my genetic risk, and this affects him too. I have taken the strategy of talking about "brain health" and not specifically ApoE.

ncjlhp wrote:My husband just knows of the family history and I am not sure why I haven't disclosed more to him. Maybe because I really don't know any more than I did with the family history- this gene is no surprise to me. I will tell him more when I figure some things out about diet, supplements and lifestyle changes.

Ncjlhp, I'm not sure why I was hesitant to disclose more to my husband either. Maybe I was afraid it would change his view of me.
~Anna
4/4 but so much more

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Re: Thoughts on Disclosure? (Who have you told?)

Postby Wondering » Tue Feb 27, 2018 10:01 pm

When I first got my 23and Me results (several years ago now), the only person I told was my husband. (I spit in that tube specifically to find out my APOE status, given two parents with Alzheimer's.) Over time, though, I have grown much more open about it. For one thing, having two parents with Alzheimer's means that anyone who knows me at all already knows that I am at high risk for the disease. I also have become a firm believer in the possibility of at least postponing, if not preventing, the onset of Alzheimer's (using the Bredesen protocol in my case), and am eager to share my optimism with others.

So nowadays, I don't share my status randomly :), but do share it pretty openly when the topic comes up. I am pleased to say that my openness has encouraged several friends who either have family histories of LOAD or worrisome symptoms themselves to decide to do DNA testing. For me, the more information I have (at least, as relates to my health), the better I do. I completely respect that some people have the opposite experience.

Any yes, at least in the U.S., the lack of protections when it comes to access to insurance (medical, life, disability, long-term care) is a serious concern. For that reason, I do not permit my doctors to say anything about my APOE status in my medical records (though I have verbally told them). (And yes, I have gotten copies of my records and know that they have followed this request.)
E3/E4, both parents have LOAD

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Re: Thoughts on Disclosure? (Who have you told?)

Postby Anna » Tue Feb 27, 2018 10:51 pm

CoachDD wrote:I am so happy you posted this question - it is quite timely for me.

Welcome to this site, CoachDD. I am happy I posted this question too. I have discovered that this journey of learning about our genetic risks is profoundly overwhelming and/or life-changing for many of us. There are experts out there, like Bredesen, who provide specific tools for reducing AD risk, but there is not much discussion about how to handle all of this from a psychological perspective.

Much of your post resonates with me -- nearly everything except the lead toxicity. What specifically caught my eye was the insomnia and reactivated EBV. I have both. Although my sleep is currently not terrible, I truly envy people who can just go to bed and sleep. I have a long history of fatigue, but it has been crippling since sometime this fall; the reactivated EBV (along with persistent C. pneumoniae) was diagnosed about a month ago.

CoachDD wrote:I just recently told my husband some general info - but to be blunt, he does NOT understand the gravity of this situation. Since I've been dealing with significant issues (lack of energy, fatigue, brain fog, etc.) for quite some time now, he's convinced that I'm just depressed and need to exercise and get out more - and I thought so too, until recently. He's never been a caregiver/nurturer, so I've learned to look elsewhere for this type of support (or a shoulder to cry on).

Yep, sounds familiar. If we don't feel safe sharing our genetic findings with our friends, and there is only so much we can discuss it with our immediate family, it can be pretty isolating. And being sick is isolating. My background is psychology, and although this is not a conventional view, I have come to believe that most of what people label "depression" is really a symptom of something that is going on in the body. Kelly Brogan promotes this idea in her book, A Mind of Your Own.

Thanks for the links about privacy law and loopholes. I will look at them later (after I sleep!). Hang in there!
~Anna
4/4 but so much more


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