Hey FB fam!!! I had the privilege of visiting an educational seminar on inhibitors as they relate to hemophilia and, in the coming days, Ill be sharing some of the generalities of the greatest information I learned there (of course keeping all specifics anonymous). Briefly, hemophilia is a blood clotting disorder, where the blood doesnt clot in a timely fashion, and when it does, the clot is weak. It prompts our bleeding episodes caused by injury to last longer than your bleeding episodes would last. It can also provoke spontaneous bleeding - bleeding without injury. An inhibitor is when your bodys immune system (which is in no way damaged or weakened by hemophilia) sees the lifesaving medication as a dangerous intruder and seeks to destroy it. We bleed ceaselessly when this happens or bleeds are much harder to stop. It can be a tragic condition, and sadly, often is. My son had this condition for about 6 months and almost died at least three times. Some of my blood family live with this condition indefinitely so their trials are beyond what I can imagine. Having hemophilia is exceptionally rare. Having hemophilia with an inhibitor is exceptionally rare among the exceptionally rare. When Jon was diagnosed, we had no idea what it was, how it was diagnosed, or how to treat it. We were terrified, behaved irrationally at times, and isolated, since we assumed that no one we knew had this condition. Any lack of understanding accompanied by isolation always proves fertile ground for irrationality and fear. So we unite annually with others who have the condition to combat that isolation that so many of us feel, to figure out ways to demolish this condition, ways to deal with it until we find a cure, and ways to help educate those that are unaware of this ailment. So keep your eyes open for some of what I learned! We can all help each other through informing others about what we see as important. Thanks for reading this! Hugs FB Fam!!!
Posted on: Tue, 22 Jul 2014 18:19:55 +0000
Trending Topics
Recently Viewed Topics
© 2015