Christmas Day 2012:
Just barely three weeks ago…I cheated death by surviving the coroner’s ‘bread and butter’. I threw a saddle clot which stopped my heart for an unknown amount of time…but merely seconds on a clock. This disease/disorder/deficiency will eventually kill me unless human accident gets me first. I’m trying to find others to gather with me in searching for more answers to many unknown questions and alternative preventative treatments. If not a cure in my lifetime, than a cure for my son and his unborn children….Please help me in the fight against this silent killer.
This is my original story:
I am 2nd generation ATIII Congenital having my first DVT/VTE at age 19 which wasn’t diagnosed immediately as I was pregnant at the time. It wasn’t until after the delivery of my son and only after the insistent urging of my mother, that the possibility of my having this at that age was grudgingly given in too and after a very painful venogram, was finally diagnosed and was not just venous, but arterial. Why was my mother so insistent as to what it was? It was because she had been living with recurring DVT/VTE’s for over half her life with her first being diagnosed directly after having given birth to me. My mother was the first generation, having skipped a generation through my grandfather. My sister is also an active ATIII Congenital. As of two weeks ago, I thought the only worry or concern I would have would be that any future granddaughters of mine would would someday become active through my son, as in the years that I have been researching ATIII the most common and recurring thread is that, in most cases, males are carriers not actively diagnosed. That has all now changed as of June 6, 2011 when my 22 year-old son was rushed to the emergency room for the third time in just as many days. He, once again, had a CT scan done of his head which revealed something perplexing to the physicians. The doctors were stumped until I arrived at the hospital where he had been taken and told them about our family genetic disorder. The final diagnosis was cerebral sinus venous thrombosis and accompanying brain bleed concurrent with stroke and seizures secondary to ATIII Congenital. He too has now been tested and diagnosed with ATIII Congenital