Aneurysm Awareness

Brain Aneurysm Foundation Brain Aneurysm Resources
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Ok, I have to admit something. I don't really know what it means to help raise awareness. Who do I tell what? Do I stand on a milk crate passing out flyers that say Beware Aneurysm (just kidding)? Is it simply just sharing your story?

I've seen things online that say watch for headaches...except I never had any. All I had were occasional eye pains and blurring. I called the local hospital once and asked if they were equipped to handle aneurysms and was asked what that was. It was scary. But I figured it might have just been the person on the phone.

Since it's September, I wondered what, if anything, I can do to 'raise awareness'.

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Harly...a good question...how was/is it with your family / friends?

Do you have some of them to ask...what may intrigue them to "pay attention" and learn about anis?

Or, are you, (like most of us)...just the "odd one"...we are so few... Worse, if the med docs/staff are not familiar with it...as you noted in your call to the local hospital... and, gosh, I had 2 ERs in 27 days and saw multiple docs between them, before my 3rd ER... and, a basic CT-head...and, I could still walk and talk...

One of the things I have promoted/forwarded to friends...is our member, Kennedy Kirsch's video...

Can we even think of more ways to promote that? I did not ask Kennedy what she has been planning...

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Thanks for your reply Patio. So far I think my sister has been the biggest promoter within the family. Meaning she tells all the nephews and nieces what I had so they can alert their doctors during checkups. Something for the file. Although I hope and pray I'm the only 'fluke' in the family. :) I did reach out to the Chicago Chapter and they said they have information they can share which would aid in this 'awareness' thing.

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That's great for you thus far...I have my pendant/earrings...that I posted for my 11th anniversary...

I wear it daily...just a few days ago...a neighbor asked me about it...workers at the stores and other customers have given tremendous compliments on my Tree of Life...and asked about it...

W/in hours of first wearing, I was at my co-op and a young man asked me if it was my "Tree of Life"...opening the subject for me...that has not stopped...store after store...groups after groups...like ...today is a school reunion... a number of my long-term friends know 'aneurysm'...and, not the rest... I emailed the strokeSTOP to all of them...for all of us at numerous ages...for both types...

I hope many more will bring forth far more ideas... for promoting aneurysm data ...

harlylena said:

Thanks for your reply Patio. So far I think my sister has been the biggest promoter within the family. Meaning she tells all the nephews and nieces what I had so they can alert their doctors during checkups. Something for the file. Although I hope and pray I'm the only 'fluke' in the family. :) I did reach out to the Chicago Chapter and they said they have information they can share which would aid in this 'awareness' thing.

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Harly... In reading some other forums...and, my research...and, I think about the Group here of parents of children who have had aneurysms ... I came across two sites that may be of interest for various reasons... for parents trying to decide what to explain to their children about the parents treatment....

As well...my first neuropsych testing apx 90 days post-discharge...I had a reading ranging from 2 years to 13.8 years... (and, I do not know the greatest volume...i.e. 3 years or 5 years or 12 years...)...tho the speech therapist ended her HHC (home health care) and did note the 3rd grade crossword puzzle level..

Sooo in some research I came across two sites of interest for me...and, wish some neuro=doc had explained them years back...

http://kidshealth.org/kid/htbw/brain.html it has "Your Brain & Nervous system

http://faculty.washington.edu/chudler/neurok.html is Neuroscience for Kids...

I have known these for some time...but did not think to bring it here... it is perhaps opening several doors... 1: to help those of us with the reading comprehension loss... 2: for parents explaining to their children on why they are in the hospital, etc...

3: can you view these carefully..and, perhaps connect w/these sites to see if they may add something about potentials like aneurysms, AVMs... and recently Campanile noted other vascular issues...

I have not even gone thru the entire sites...or if they do provide any of this already...And, there may be other numerous kids health sites.. and, back to our Group here of the parents of children w/aneurysms...

At least having some knowledge of these could (my words?)...reduce the horrors of learning about aneurysms/other... after an occurrence...of a sibling, a school friend, a parent...

Just thoughts...and, I am too disorganized to review the existing fully...or take an attempt to connect...

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