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AVM Survivors Network

Anniversary!


#1

Today is ten years since my first Gamma Knife. Performed at Toronto Western Hospital. I was almost 11… my birthday is in July. It tackled “Joyce” as I now call my AVM, however it left behind two “problem areas” that I named “Earl” and “Pearl.” They were discovered four years later after routine MRIs.
Question: where do we add our birthdays and anniversaries to our profiles?


#2

Julia,

You can set your birthday in your profile. Click on your icon, then click again on your icon inext the pop-up window, then ☼Preferences, then Profile. Date of birth is right at the bottom.

I think your “anniversary” is the anniversary of you joining the site.

I would caution as to how much you share about yourself online. This is all publicly-accessible stuff. I’m sure I’ve trashed this rule in regard to my medical history but as a general guide, there are people out there who will happily “harvest” information about you from different web sites and use that to impersonate you or gain monies, somehow.

Hence, don’t share email addresses, contact details etc. on the open forums and there is no obligation to complete some personal details fields.

Richard


#3

Happy Anniversary, by the way!! :pizza: :birthday: :champagne: :tropical_drink:


#4

Thanks, Richard! And today is actually 10 and a half years since the bleed (November 24 2006).

Thanks for the warning, too… I try to be internet-safe… I don’t even use Facebook or anything other than e-mail!


#5

Well done Julia on reaching that milestone :slight_smile: , I still remember the day I was told I was AVM Free, and had to ask 2 times to be sure I heard it right hehehe, Its always nice to see these posts, Thanks for sharing.

Martin


#6

@DickD Am I sharing too much?


#7

Thanks Martin–and congratulations on being AVM free!


#8

I don’t think you’ve shared too much. But sharing your birthday and any indication of your age gives someone information that can be used (with other info) to open bank accounts, get id, etc. So think about what is valuable to people on this forum that you share – i.e. what helps people understand AVMS, treatment, experience in hospital – not stuff that ought to be private to you, that is not necessary for people to know in detail.

I’m very nervous about personal data. I don’t like to give my date of birth to any web site. But I’ve given a lot of personal information away in the last 9 months relating to my AVM experience here because I want to help people who arrive here just as scared as I arrived. I hope that never gets abused but it is a risk.

Equally, some people share their location, friends, their appearance, etc on sites such as Facebook. Criminals link such information on different web sites to form a composite set of data if they want to steal an identity, so don’t just think about what you share here, think about what you share elsewhere, especially if it is easy to link the information.

This is all getting serious and boring. Really, we just want to wish each other the very best and happy anniversary or happy birthday.

Well done on your anniversaries!

Richard


#9

@DickD Great, thanks! I took out my birthday from my profile, although there may have been times when I said how old I was at the bleed and how long ago that was…pretty easy math! I have my town on my profile, but I think I will remove it.