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4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

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Flora
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4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby Flora » Tue Sep 03, 2019 8:01 am

Hi, I recently found out I’m 4/4 and broke down. I’m now writing a piece for a magazine on people finding their results and the community of people that support them.

If you are willing to be quoted (anonymously or not) I’m looking for comments on
-how you found out
- how you felt
- whether this group or any others have been supportive
-if you’ve changed your lifestyle as a result

Any help greatly appreciated. I think the support and community provided by this group is amazing and I’d love to share some of that.

Thank you
Flora

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Re: 4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby HopefulCaroline » Tue Sep 03, 2019 11:12 am

Flora wrote:Hi, I recently found out I’m 4/4 and broke down. I’m now writing a piece for a magazine on people finding their results and the community of people that support them.



Hi Flora,

I'd like to extend a warm welcome from the APOE4 community. This is a wonderful and supportive group. You are not alone. Many are overwhelmed when they learn about their ApoE4 status and don't know what to do. Having ApoE4 increases one's risk of late onset Alzheimer's but it is not a death sentence. At 28 years old, you have time on your side and can make lifestyle changes that can protect cognition if you have not already done so. There is wonderful information in our primer that has been super helpful to so many of our members.

Can you tell us more about the article you are writing? I know this community has supported journalists in the past and we are all eager to get the word out about the power of knowledge and lifestyle modification when it comes to Alzheimer's. I believe you will find members willing to tell their stories if it will help others in some way. Please do keep us posted on your work.

Sincerely,
Caroline
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Re: 4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby Sara » Tue Sep 03, 2019 3:48 pm

Flora wrote:Hi, I recently found out I’m 4/4 and broke down. I’m now writing a piece for a magazine on people finding their results and the community of people that support them.

Greetings Flora and welcome to the apoe4.info site! As a health coach working with several individuals who have found out they carry the apoe4/4 gene I can attest that everyone's experience is different. Most notably, to some it is a traumatic event and yet after working through an initial period of fear and distress most individuals level off and use the knowledge as a signal to begin living a healthier lifestyle. Some individuals take it in their stride but again, the common thread is to use this knowledge as a call to enhance and improve lifestyle. There is a lot of support, knowledge and encouragement on this site so I wish you a warm welcome and look forward to reading your article.
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Re: 4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby IForgot » Wed Sep 04, 2019 8:46 pm

Flora wrote:Hi, I recently found out I’m 4/4 and broke down. I’m now writing a piece for a magazine on people finding their results and the community of people that support them.

If you are willing to be quoted (anonymously or not) I’m looking for comments on
-how you found out
- how you felt
- whether this group or any others have been supportive
-if you’ve changed your lifestyle as a result

Any help greatly appreciated. I think the support and community provided by this group is amazing and I’d love to share some of that.

Thank you
Flora

Hi and welcome. PM me with any questions. I'm fairly scientific. It would be helpful to know more of your goal in writing a story. i.e. what do you hope to accomplish with your article. I didn't catch your age?
Best regards,
Steven

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Re: 4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby Flora » Sat Sep 07, 2019 7:41 am

Hi Steven, not sure how to PM you. I'm 28.

Thanks,
Flora

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Re: 4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby slacker » Sat Sep 07, 2019 9:04 am

Flora wrote:Hi Steven, not sure how to PM you. I'm 28.


Hi Flora;
Now that your new posts have been approved, you should be able to PM. Unfortunately, we get more and more spam, and so review new posters' content. You can learn how to PM here.
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Re: 4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby emmabarton » Sat Sep 07, 2019 10:46 am

Hi, I recently found out I’m 4/4 and broke down. I’m now writing a piece for a magazine on people finding their results and the community of people that support them.


Hi Flora,

I wanted to chime-in and emphasize the the notion that virtually any question you might have here is likely addressed and available! There exists such an incredible wealth of information at your finger tips on this site. If you haven't checked out the "How-To" get the most out of the APOE4.info website I recommend starting there.

Light and peace on your journey!

Emma
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Re: 4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby Rainbow » Sat Sep 07, 2019 12:57 pm

Flora wrote:If you are willing to be quoted (anonymously or not) I’m looking for comments on
-how you found out
- how you felt
- whether this group or any others have been supportive
-if you’ve changed your lifestyle as a result

Hi Flora, I'm a twenty-five-year-old and 4/4. I'm also interested to know more about the purpose of your article and who your audience would be. Hope to be able to help!
4/4

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Re: 4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby TheBrain » Sun Sep 08, 2019 8:03 am

Flora wrote:Hi, I recently found out I’m 4/4 and broke down. I’m now writing a piece for a magazine on people finding their results and the community of people that support them.

If you are willing to be quoted (anonymously or not) I’m looking for comments on
-how you found out
- how you felt
- whether this group or any others have been supportive
-if you’ve changed your lifestyle as a result

Any help greatly appreciated. I think the support and community provided by this group is amazing and I’d love to share some of that.


Flora, I’m sorry to hear that finding out you’re 4/4 made you break down. But I understand. I was terrified for many months when I first found out. If you’re still looking for comments, feel free to PM me. I realize you might have received enough comments by now and moved on. Let me add that I think you’ve taken a great step for yourself and others by writing your article.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!

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Re: 4/4 28 y/o journalist wanting quotes for piece on finding out and supportive community

Postby J11 » Sat Sep 21, 2019 12:23 pm

Flora, I know how difficult it can be when first learning about dementia risk, especially since epsilon 44 is not a genotype which would typically run true within a family, so it can be entirely unexpected. Some that I have known with dementia had no family history at all, it was a complete mystery (perhaps they were even epsilon 33s).

In my family, our loved one who developed severe dementia (along with many others in the extended family) genotyped epsilon 33. We still have not been able to sort through what the causal variant might be. It is difficult knowing that you are at high risk, though it is also difficult not knowing. Possibly up to half of AD patients are epsilon 33.

Running a genetic study to fully unlock the genetics of AD and provide comfort for the many tens of millions of Americans at high risk for dementia would seem to be highly worthwhile, and it would be entirely doable and given current genotyping costs it would not be overly expensive, though for whatever reason there has been no push within the dementia community or elsewhere to make this happen. The AD research budget is now in the multi-billions per year which makes inaction even more inexplicable.

I have contacted extended relatives on 23andme, GEDmatch etc. and asked about their family history of dementia, they often apparently assume that they are low risk if they were epsilon 33. My rebuttal typically creates a chilling wave. "Yes, but our demented relative genotyped epsilon 33 and this is also considered low risk." 23andme has tried to make people aware that traits such as AD are highly polygenic, yet it seems that this message really has not permeated the collective consciousness. People do not seem to appreciate that dementia is not other people's problem: it truly is everyone's problem. The push to extend human lifespan will also push against the inevitable risk of AD in aging. Everyone develops AD pathology by age 90. Increasing human life span to 150 would likely result in 50 years of dementia for most people. Perhaps we will cure mortality, but then curing dementia becomes even more necessary. From my current understanding, given the high polygenic nature of AD, on a bad day anyone could roll the genetic roulette wheel and hit high risk AD. What is particularly alarming for me is that this is not merely an exercise in rhetoric. Some of these extended relatives really do have the high risk variant; the problem is: It is not clear which ones. (Alzheimer's is the solid green line second from the bottom, making it one of the trickier polygenic traits to unlock).

Polygenic 2.PNG


https://www.biorxiv.org/content/10.1101/175406v1

Strangely, epsilon 4 is the ancestral genotype and possibly provided some sort of advantage (perhaps which was lost as humans lived longer and longer and then were subject to the dementing influence of epsilon 4). Many people in Africa are epsilon 4 (epsilon 44), though seem at lower risk (This is an active topic for discussion on this forum; as a basic hunch I would suggest that the extremely low cholesterol levels in Africa might be protective ( though that is a pure guess)).

It is has only been over the last 10 years, once people had access to genotyping, that a sociopolitical force such as this forum could arise to actually advocate on behalf of those with epsilon 4. There is no other common genotype out there that is anything close to epsilon 4. Now that the epsilon 4 community has been alerted, there is bipartisan support to make a committed effort to resolve the problem. The plan is to accomplish this by 2025; given that medicine usually has long lead times, this should imply that effective treatments are already on the horizon.

https://alzimpact.org/media/serve/id/5d839470cfa6f

Such treatments are clearly emerging. Grifols' IVIG treatment achieved 61% less decline in moderate AD. That is a simply startling result. There are no other current AD treatments that are even close. Why isn't there a street celebration, a march, a mass catharsis, a something? This begins to approach the dream of the end of Alzheimer's (though not quite). Most people seem completely unaware of this result. In fact many even on this forum likely are not fully aware of how significant this is.

circ, you out there? Ready to go celebrating? If it were me on the big chair, I think that I would throw a quarter billion of the AD research budget into a government financed clinical trial of this. This is too important to wait for private companies to do profit
maximization calculations. There has been so much basic research that never seemed to yield a return (notably the amyloid hypothesis), yet when clinical success is finally achieved, no obvious incentive is put on the table. A billion dollar X prize for dementia?

https://mondaymorning.com/2018/11/15/eu ... l-or-hold/

https://www.grifols.com/documents/51507 ... 882f2f70c7

https://www.grifols.com/en/the-results

In fact there are no current AD drugs that offer anything but symptomatic relief. That is, They have ZERO actual benefit. After decades and decades of research nothing has offered any benefit. Our loved one during the most difficult stage of dementing illness (moderate dementia) was prescribed anti-psychotics immediately upon a hospitalization. This in spite of a massive class action law suit that was filed and successfully argued against this off-label use. We never administered anti-psychotics, though with modern hospital staffing there is almost no way around it.

Now, however, there is line up of treatments that have begun to show real potential including,
inhaled insulin http://www.natap.org/2019/HIV/081419_01.htm ,
Keppra https://www.healthline.com/health-news/ ... s-050615#1
binaural beats and others.

There is simply too much momentum and too many actively involved members of the dementia community to allow dementing
illness to languish on the back burner any longer. This forum itself has played an impressive role in creating a cure!

Of course, the one high card that the dementia community has which is largely unavailable to other advocacy communities is
the power to stop the pandemic. Knowing one's genotype would allow one considerable control over the genotype of those
embryos selected to be offspring. With other illnesses, when it is reported that another decade has passed without any progress to more effective treatment and that there is no sign of potential for decades into the future, there is no clear winning strategy that one could pursue. Yet, epsilon 4 AD changes the logic. If no treatment advance is expected or verifiable evidence is insufficient, then embryo selection becomes a choice worthy of consideration. This imposes a consequence for the lack of research progress. While it is true that we are beginning to see effective treatments emerge, it is still empowering to have backup strategies if time begins to roll forward without the future arriving.
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