Replies to This Discussion

Permalink Reply by Cindy Phillips on March 21, 2011 at 3:49am

GA-1

ModeratorPermalink Reply by Trish on March 21, 2011 at 5:59am

Yay!  I'm the first NCer...so I'm NC-1!

Permalink Reply by Georgia Thompson on March 21, 2011 at 7:45am

I hope we are planning a get together here!.....NC-2

ModeratorPermalink Reply by Trish on March 21, 2011 at 8:10am

Me too Georgia, I would love to see you again!

Permalink Reply by Joe on March 21, 2011 at 1:34pm

AL-1

Permalink Reply by Cindy Phillips on March 21, 2011 at 4:19pm

Okay, this is what I've (roughly) seen so far today in this site's membership:

Potentially 13 or 14 in SC, 44 or 45 in NC, 22 or 23 in KY, 69 in VA, 47 in TN, 30 in AL, 92 in FL, 10 or 11 in WV, 10 or 11 in AR, 12 - 14 in MS, 20 or 21 in LA, & 65 in GA. (Startling? = yes. Quiet alarming, isn't it?) That's just the numbers from this site... I know there are still others out there that aren't on this site. Please urge everyone you've talked to on here to please join their 'regions' (regional groups), as one can see, the numbers are there but yet, EVERY one of us have felt some degree of 'alone in all this AVM/vascular issue' or that 'no one in our everyday lives understands'. (As of right now, there are 2,843 members on this site alone... that's A LOT of people. I understand the mathematical computation in computing the % of AVMs/vascular issues, but approx. 2,843 cases (listed just here on this site alone) is A LOT of cases. AVMs/vascular issues may be 'rare' in the whole grand scheme of the ENTIRE population (thousands of cases compared to billions of people) but I can not dismiss almost 3,000 cases as 'rare'. (To me: 1, 2, or a handful of cases are rare; not almost 3,000 cases. Additionally, these vascular abnormalities have been with most of us for XX number of years (from birth), so that means these issues have been 'around' for quiet awhile, versus something 'entirely new just now popping up'. I'm just absolutely shocked, dumbfounded, & growing even moreso skeptical & weary everytime I see the 'numbers'... 'numbers' that are always increasing due to another case of these type of issues have been found.)  

Permalink Reply by Cindy Phillips on March 21, 2011 at 4:20pm

Thank you all for replying.

ModeratorPermalink Reply by Trish on March 21, 2011 at 7:02pm

Cindy, I know of a few more NCers but lately I haven't seen them on this site.  I can give you names if you want.  I get what you're saying about the numbers, but I gotta say I kinda like being "special" in the grand scheme of the rest of the population!  Everyone of the people that I've met through this site is special and incredible!

Permalink Reply by Cindy Phillips on March 21, 2011 at 8:08pm

(Iactually counted those figures listed above for each of those states, instead of just putting the 'search result' figure.

Thanks, Trish. Can you send them an invite to the Group through the invite button or message - any which way that will get their attention (like when it goes to their email) even when they don't come on the AVM site?

Trish said:

Cindy, I know of a few more NCers but lately I haven't seen them on this site.  I can give you names if you want.  I get what you're saying about the numbers, but I gotta say I kinda like being "special" in the grand scheme of the rest of the population!  Everyone of the people that I've met through this site is special and incredible!

Permalink Reply by Joe on March 21, 2011 at 8:47pm

Cindy,

 

If you take the worlds population of 6 billion and mutiply that by .005 which is one half of one percent you get 30 million people.  According to the doctor I had, this was the guess of population that probably had an AVM, but he also stated that only one half of one percent would have a problem with their AVM.  This number works out to be 150,000 people worldwide.  You end up with better odds of winning the lottery than having a problem with an AVM.  I would have rathered won the lottery than had an AVM but that did not happen.  When the problem is yours it is enormous, but when you work out the math 150,000 worldwide is just a small dot on a piece of paper.  Compare to heart attacks which has a death rate of 425,425 per year in America.

 

Joe

Permalink Reply by Cindy Phillips on March 21, 2011 at 9:20pm

Thank you, Joe, for those figures & information. I agree with you... I would have much rather preferred we all won the lottery - :). It just shockingly 'amazes' me that such a huge figure would be considered 'rare'. In the grand scheme of the figures, it is significantly smaller (but I definitely wouldn't classify such a big number as rare - lol). However, since heart attacks are ultimately derived from a vascular condition, it would appear that a lot more attention would have already been given to any and all aspects of vascular conditions by now. I watched a documentary a few weeks ago with a doctor/scientist guy and he was talking primarily about the brain (& stated 'more research on this area (the brain) was needed'), summarized that "what's good for the heart is good for the brain"... all boils back down to the vascular & blood (pressure, plaque, chlorestoral, etc.) being the underlying 'cuprit'/'non-culprit'.  

ModeratorPermalink Reply by Barbara H. on March 23, 2011 at 3:34pm

I guess I would be TN-1. William and I technically are in The Mid-South. Although I have lived in Atlanta...Savannah...Norfolk too!

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