Help me understand what your APOE experience has been

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5Brains
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Joined: Sun Aug 01, 2021 5:06 pm

Help me understand what your APOE experience has been

Post by 5Brains »

HI! I'm a 4/4 and hoping to chat with a few 4 and 4/4 women to get a better understanding of your experience:
Why you decided to find out your status and what it was like to find out, etc. If you're willing to answer a few questions like these, I'd be grateful as it will help inform a program I'm putting together for women.
Please let me know if you prefer email, text or phone.

Thanks! Lauren
NF52
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Re: Help me understand what your APOE experience has been

Post by NF52 »

5Brains wrote: Sun Jun 04, 2023 1:13 pm HI! I'm a 4/4 and hoping to chat with a few 4 and 4/4 women to get a better understanding of your experience:
Why you decided to find out your status and what it was like to find out, etc. If you're willing to answer a few questions like these, I'd be grateful as it will help inform a program I'm putting together for women.
Please let me know if you prefer email, text or phone.

Thanks! Lauren
Hi Lauren,

As one of the Moderators and Senior Support Staff, and someone with ApoE 4/4 who found out my status in 2014 when 23&me didn't have to provide a "warning", I think I can speak for many women that many of us found out while looking for ancestry, or other health data, or simply because a doctor included it in a blood lab. If you take a look at Stavia's experience the Primer, you'll see how an M.D. with ApoE 4/4 reacted to the news, knowing she had a history of two severe brain injuries:
It’s very scary to open up 23andMe results or run your raw data through Promethease or similar and see red words flashing at you “high risk”. When I did this naively a year ago (2019 update: it's now several years ago and I promise the pain fades, and now I just live my life) I went to pieces and cried for a week. Thank heavens I found this group very soon and everyone rallied and helped me over those awful first weeks. The first thing is to stay calm and think carefully.
FWIW, I've seen women who joined this forum recently much more informed about both ApoE4 and advances in Alzheimer's preventiont than people whose experiences were similar to mine 9 years. ago.

Most of our members prefer to stay anonymous, and so might be reluctant to communicate by text or phone. You may want to offer the option of sending you a Private Message to offer their experiences.

It may also help if you tell us more about what you envision for this "program": An informational forum, a talk to a local group, a virtual social event? Of course, once you develop the program, you would not be able to promote it here, per the Community Guidelines.
Trust. Ulterior financial interests complicate our interactions. Do not self-promote or advertise.
https://www.apoe4.info/community-guidelines/

Nancy
4/4 and still an optimist!
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