dear apoe4 brothers and sisters
I am working on a website on lifestyle risks on Alzheimers here in Switzerland and think to work as a brain health coach. I am thinking of coming out on my website as a apoe4 carrier. However i never found in the web people coming out as apoe4 carriers, Quite a few famous doctors and specialists on the topic talk only about their parents or close relatives as being struck by Mr A.... I wonder why is this reluctance?? Are people afraid of coming out?
looking forward to hearing from you on the subject
yours in the apoe
Stefan
coming out as apoe4 carrier
Re: coming out as apoe4 carrier
Hi Stefan, Welcome to a site where open conversation exists. From my own experience being a 3/4 it is most comforting to have a place to go to ask questions and learn so much from people sharing information. Please look at the primer written by a doctor who is a 4/4.
Re: coming out as apoe4 carrier
Stefan, the implications of "coming out" are complex and varied. I've come out, not only as a 4/4, but also as someone who's overcome cognitive decline... a walk-in closet? 
.
In the US, I first had to be sure that my life insurance and long term care insurance (turned down for other reasons) were in place before allowing my 4/4 status into my medical records. In our country, we can be denied these two protections simply for revealing our genetic status. We're currently protected by the Genetic Information Nondiscrimination Act of 2008 (GINA) against discrimination in the workplace or from being able to obtain medical insurance. I know some of this may be different in your county.
That said, many people working in responsible positions, such as physicians, lawyers, pilots, politicians would have reasons to prevent their genetic status from becoming known so as to protect their jobs. "Coming out" would put them at risk of extra scrutiny and even job insecurity.That said, I'm proud of you for considering "coming out." As more people do, a greater public awareness of APOE status will develop and a resulting move towards earlier Alzheimer's prevention will spread.
.In the US, I first had to be sure that my life insurance and long term care insurance (turned down for other reasons) were in place before allowing my 4/4 status into my medical records. In our country, we can be denied these two protections simply for revealing our genetic status. We're currently protected by the Genetic Information Nondiscrimination Act of 2008 (GINA) against discrimination in the workplace or from being able to obtain medical insurance. I know some of this may be different in your county.
That said, many people working in responsible positions, such as physicians, lawyers, pilots, politicians would have reasons to prevent their genetic status from becoming known so as to protect their jobs. "Coming out" would put them at risk of extra scrutiny and even job insecurity.That said, I'm proud of you for considering "coming out." As more people do, a greater public awareness of APOE status will develop and a resulting move towards earlier Alzheimer's prevention will spread.
Re: coming out as apoe4 carrier
Thank you Julie
For disclosing the implications of coming out. I never thought of the legal consequences, eg medical insurance. Being a retiree i dont have to work any more for supporting myself. I understand now why people talk only about their family risks....i have placed my being 4/3 in the draft of my homepage, i have to inform myself about the legal implications you mention before i put in online... But i will keep telling my friends my friends about my gene status.
Are you one of the recovered patients of Dale Bredesen? Of course, your coming out as being a recovered 4/4 person is extraordinary and special and also very valuable, giving hope to many scared people! coming out knowing the implications is quite brave! Do you still have to work for your living? Here in Europe the idea that people can recover from early A. virtually unknown and would be considered as a wonder... i have not seen news on A recoverees in the media.
Do many people in the US get their apoe status tested?
For disclosing the implications of coming out. I never thought of the legal consequences, eg medical insurance. Being a retiree i dont have to work any more for supporting myself. I understand now why people talk only about their family risks....i have placed my being 4/3 in the draft of my homepage, i have to inform myself about the legal implications you mention before i put in online... But i will keep telling my friends my friends about my gene status.
Are you one of the recovered patients of Dale Bredesen? Of course, your coming out as being a recovered 4/4 person is extraordinary and special and also very valuable, giving hope to many scared people! coming out knowing the implications is quite brave! Do you still have to work for your living? Here in Europe the idea that people can recover from early A. virtually unknown and would be considered as a wonder... i have not seen news on A recoverees in the media.
Do many people in the US get their apoe status tested?
Re: coming out as apoe4 carrier
Good for you, Stefan! After all, we comprise 25% of the population. The more of us who "come out of the closet", the more easily we can spread our prevention message of HOPE.i have placed my being 4/3 in the draft of my homepage... But i will keep telling my friends my friends about my gene status.
Lol, I wish. I could the long road to finding his protocol as outlined in this talk at the Buck Institute. This was the first time that I had ever done any public speaking... and I was petrified.Are you one of the recovered patients of Dale Bredesen?
-
Orangeblossom
- Senior Contributor
- Posts: 802
- Joined: Tue Nov 07, 2017 10:11 am
Re: coming out as apoe4 carrier
Something I would consider before doing this would be other family members and if they know about their status too. It may concern a sibling or parent, or indeed another blood relative who hasn't thought about testing.
Although you do then have the positive, that maybe it would encourage them to get tested and make changes. I guess it depends on the family member. I think it would worry some of my family, for example my in laws might worry about the children, etc, so would possibly not mention to them. It can be complex at times.
I mean, think about how it might feel to log on to Facebook and see a relative has posted they have a risk gene for a scary disease. It might be a bit stressful for those seeing this, un-warned. It's different from asking them if they want to know, etc, in advance, but that could be an idea perhaps.
Although you do then have the positive, that maybe it would encourage them to get tested and make changes. I guess it depends on the family member. I think it would worry some of my family, for example my in laws might worry about the children, etc, so would possibly not mention to them. It can be complex at times.
I mean, think about how it might feel to log on to Facebook and see a relative has posted they have a risk gene for a scary disease. It might be a bit stressful for those seeing this, un-warned. It's different from asking them if they want to know, etc, in advance, but that could be an idea perhaps.
Re: coming out as apoe4 carrier
Hi Julie
Thanks for the link sent me concerning your speech at the apoe meeting. It is very impressive and empowering for me and other apoe carriers and for those who care for their mental health. I admire your courage for coming out, knowing now about the inconveniences that coming out brings to apoe people in the us.
Are you planning to write book on your healing story? It would be empowering for all those fearing the disease!
warm regards, Stefan
Thanks for the link sent me concerning your speech at the apoe meeting. It is very impressive and empowering for me and other apoe carriers and for those who care for their mental health. I admire your courage for coming out, knowing now about the inconveniences that coming out brings to apoe people in the us.
Are you planning to write book on your healing story? It would be empowering for all those fearing the disease!
warm regards, Stefan
