“That’s it” …. HAS to be the two words that come to mind after a Google search result returns minimal information on your medical condition.
The 12-12-12 journey has affirmed that rare medical conditions don’t get the press coverage, and financial backing to foster awareness.
What type of information is available to you when you are diagnosed with a condition that AFFECTS 1 in 200-500 PERSONS?
The previous statistic confirms why I had a somewhat difficult time locating a support awareness t-shirt and bracelet for this months 12-12-12 project.
That’s why I believe it’s crucial to embrace and support charitable nonprofits and support groups.
Here are two GREAT examples:
AVM survivors network (Where I located my awareness bracelet! Thank you Kim and Jaclyn McDermott)
The reality is:
Person is greeted by a specialist that quickly rattles off complex information and often times the individual and their families are bombarded by a floodgate of information.
After you digest the diagnosis, or in this case SURVIVE “sudden hemorrhage, or bleeding into the brain, a form of stroke,” your going to want more information about your condition.
Realizing and appreciating the importance of nonprofits and support groups I have moved from the words, “Thats It” TO “Thank God”!
I would like to leave you with 3 AVM facts from The Aneurysm and AVM Foundation
About 5-10% of AVMs are discovered by accident while the individual is being tested for other unrelated medical problems.
AVMs arise in the brain, spine, lungs, kidneys and skin. Brain AVMs are the most common.
Most patients present between the ages of 20 and 60 years of age. The mean age is about 35-40.