So a couple of people suggested I start a discussion to introduce myself.
My name is Amanda and I just moved to Atlanta three weeks ago! I'm currently in the Genetic Counseling Training Program at Emory and I'm loving it. Coming from a genetics background, I'm definitely a genetics geek. :) Hence why I'm in the program.
Anyway, I was doing a research project for one of my classes, and was perusing through other disorders' support group websites, and I was like huh. I wonder if VWD has one. Sure enough here it is! I've never been a part of a support group website. I've always been fairly confident in my disorder, and in knowledge of what I can/can't do, can/can't have, etc. But I'm excited to be a part of this group and help anyone I can and get to know people who understand what I'm going through.
I usually tell anyone I'm going to be spending a significant amount of time with that I have Type III VWD. Then come the inevitable confused looks. What is that? So if you get cut, will you bleed to death? Should I call 911 if you get a bruise? Etc. Some people ask these questions, others don't (but I know they are thinking them). And it's uncomfortable. Talking about something so personal and health related because I kind of have to. If I run off to the bathroom and am gone for 3 hours, I don't want them calling 911 just because I have a bloody nose for 3 hours. I don't want them thinking I'm being abused at home just because I show up with significant major bruises from bumping into a door or tripping over the sidewalk (because of course I believe I inherited clumsiness along with VWD). I remember when I was a kid, my next door neighbor called DCF on my parents because I told her I tripped down the stairs. (I had, see previous comment about clumsiness). To be fair, it did look like I got beat up (but my neighbor knew all about my bleeding disorder, so no excuses). It was an awful time. I think during my childhood was the worst part of my bleeding disorder. From having PE teachers afraid that I was going to trip in the grass and die to overly concerned neighbors like the one above.
So I had to go through the whole VWD spiel with my classmates in the program. And I try to act all nonchalant, but I still got those questions. And even with my explanations, no one I know really understands. The fear I get when I hurt myself, what if it's a muscle or a joint bleed. Being scared of my own nose during the winter. I don't know. Maybe I do need encouragement from this website. I guess until I wrote this I didn't realize how scared of living VWD has made me.
So that's about me, well me and my VWD at least. I'm sure more stories will come. I'm really excited to see people on here who understand where I'm coming from. Last quick fun story, my brother was actually born with Type 1 VWD (which as you probably know is inherited autosomal dominantly), HOWEVER, neither of my parents have VWD type 1!!!! And he is their biological child. so I've basically been calling him a mutant since we were kids.
Thanks for all the welcomes by the way!