I am so grateful the wonders of technology!
Over the course of 20 months - after nearly TWO YEARS of searching - I've located total of 5 people with Factor VII Deficiency in the past 7 months. We are not alone and it feels good! It is emotionally draining to "live" with a chronic condition and NOT have any one to talk to. If it weren't for the internet, I would have never found these people. I had a hard time finding the rare among to rare, but I got it done.
I can only imagine how difficult it was to network before having the world at your fingertips.
I've also heard some heart-wrenching stories from some of these people, Niki's "factor friends" as I like to call them. There are so many stories about death, disease, and personal loss within the blood disorders community. It also makes me truly appreciate the fact that Niki is living in an era where medical and biotechnology only gets better and better. Blood transfusions are safer because of the blood disorders community. A drug, a wonderful drug all the way from Denmark received FDA approval in 1999 because of the community. And there is so much more to come!
Niki is so fortunate that she will never know a time when blood was unsafe and prophy wasn't available. Even more importantly, I hope she values all of her "factor friends" in the years to come. :)
To think, technology made this all possible. And it only gets better, right?