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New - e4/e4 and other issues

Posted: Sat Aug 26, 2017 8:04 pm
by kmg71580
Hello everyone!

This is my first time to this sight and I am so glad to have found it! My name is Katie. I am 37, a wife and mother of 3 girls, living in Northern California.

I recently completed 23andme testing and uploaded the data to promethease. I always knew I had some unfortunate genetics (family history says a lot) but wow! It turns out I have two apoe4 alleles and two mutations on my brca2 gene (substantially increasing my risk of breast/ovarian cancer). Both of my grandmothers had AD and my mom died at age 50 from ovarian cancer. My dad and the men on his family have a very serious history of cardiac disease.

I've spent the 10 or so days since I learned these results alternating between complete panic and despair, and being on a mission to learn as much as possible and develop a plan. I have an appointment with a genetic counselor soon to confirm all of this, and have notified my obgyn and primary doc to start going over this with them.

So I guess that's my story - I just wanted to introduce myself and thank you all for participating in a site like this. It helps to know I'm not alone. I've begun going through the primer and I'm looking forward to diving in deeper. If anyone has words of wisdom for navigating these first couple weeks please pass them on. It has been quite a shock.

Re: New - e4/e4 and other issues

Posted: Sat Aug 26, 2017 8:24 pm
by KatieS
Welcome Katie from another NoCal Katie. So commendable to already have an appointment set up to review your genetic results. You are so young to begin the broad lifestyle dementia prevention program , which interestingly seems to dovetail with breast cancer prevention (13 hour overnight fast, rare alcohol, not obese, exercise, etc...) Right now you need support, so feel free to ask questions or vent.

Re: New - e4/e4 and other issues

Posted: Sat Aug 26, 2017 8:30 pm
by Stavia
hi Katie, welcome to our group. The double whammy must be absolutely terrifying and bewildering. We dont specialise in BRCA here but there must be online communities that do. However we do specialise in Apoe4 and can certainly help with that aspect. And as our Katie points out, the prevention strategies are identical for reducing both genes having a deleterious effect.
We are here to help you.

Re: New - e4/e4 and other issues

Posted: Sat Aug 26, 2017 8:36 pm
by Stavia
words of wisdom? dunno if this is wise but here goes:
It was personally awful. I couldnt get out of bed and go to work for a week. I lay under the duvet and cried.
We can't make that pain and terror go away right now. But you are not alone - we will help. And it passes. I promise. Roll with the blows, live a minute at a time, don't think too far into the future and know you will get to a place where you will eventually feel grateful you know, because you can do everything possible to reduce the effects of your genes.

Re: New - e4/e4 and other issues

Posted: Sun Aug 27, 2017 9:33 am
by JML
Hi Katie
We are so glad that you found this site too! What you are feeling is very normal, but know that you are not alone, and you have found a very supportive community of people who are very knowledgeable about all things ApoE4. You should be commended for trying to learn as much as you can about what this all means for you. If you have any questions, please ask!

If you have not already found it, the Primer that Stavia and other wise members have compiled is a great place to start to learn about ApoE4. There is a lot of information, so take your time, and again--ask any questions to the community.

Peace to you on your journey,

Re: New - e4/e4 and other issues

Posted: Sun Aug 27, 2017 11:46 am
by kmg71580
I really appreciate such quick and thoughtful replies. Today I'm feeling most concerned about my kids. As a daughter and granddaughter, I've watched what these disease have done to people I love. I hate to think of my kids having to watch me go through this. But also I feel so guilty that they may have inherited these diseases as well. How and when will I talk to them about my situation, and how and when will I talk to them about their risks? There's just so much to think about from so many angles and I feel lost. It's literally all I think about.

Re: New - e4/e4 and other issues

Posted: Sun Aug 27, 2017 11:55 am
by SusanJ
The early days are the toughest. It is all one thinks about when you first find out. Hugs from all of us who have been there.

We have a thread on whether or not to tell your kids. It might help you think it through all the angles based on what others went through.


Re: New - e4/e4 and other issues

Posted: Sun Aug 27, 2017 12:15 pm
by hill dweller
Hi Katie and welcome! I'm in NoCal, too, and also mother to three. My kids are adults, and all know their own ApoE status. They have taken steps to modify their diet, they have begun to take a modest number of supplements, and each has adopted a habit of regular exercise. None of them smoke, thank goodness, and neither my husband nor I ever did, either.

Since you are only 37, your children are probably still at home with you, youngsters, not adults. Look at it this way: if you implement strategies now to protect yourself via diet (cut OUT sugar/starches & eat healthy fats), you will protect your family as well as yourself. Give them good habits. Teach them how to cook. Teach them how to shop. Teach them how to read labels. Play with them; that's healthy exercise and you'll enjoy it, too. If you smoke, quit. Let your lifestyle be their example.

Re: New - e4/e4 and other issues

Posted: Sun Aug 27, 2017 7:26 pm
by kmg71580
hill dweller,

Your comment really resonated with me. You're absolutely right, I can start instilling great exercise and eating habits now so that hopefully when the time comes to discuss this with them, they'll already be on a healthy path. I just wanted to say thank you for your thoughts. They helped a lot!