Hi! I'm new :)

Hello everyone!

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!

Welcome! My 4 year old daughter is Type 3.

Welcome, Amanda, we're glad to have you here. How terrific about the genetics counseling program -- I look forward to hear more about what you learn.

Hello Pandamandabere!

I really enjoyed your discussion, your energy, and wisdom! You are most certainly a welcome addition here!

Welcome to the group! Great stories!

I agree that sometimes the scariest part about VWD may actually be the lack of knowledge and understanding about the disease that others in the wider community have, rather than the disease itself. People with VWD tend to seek out as much information about it as possible and become experts. But, little is known about it by the people who surround them everyday, often including medical staff unfortunately.

I look forward to your posts!

Hello Amanda!!!

Welcome to the group!

Thank you for sharing your story. I look forward to hearing more about your study of genetics. I have "acquired von Willebrands disease" which started about six years ago with a few bad nosebleeds and after an interested hematologist had me tested for vWD showed me with severe type one or type three. I am now 73. My VWF flucuates from near zero to <<10% and my Factor VIII hovers around 5% or less. Oh well. I also have Arteriovenosal malformations which spontaneously start to bleed in my GI tract. Mostly in the stomach or duodenal area but I know my small bowel has AVMs and my mouth and head have AVMs. Stimate occasionally seems to work for very small bleeds but I have spent a fair amount of time in the hospital getting transfusions, factor infusions and recently IVIG treatment. I have recently passed an inhibitor mixing test but I also have had a positive inhibitor test and the last time large amounts of factor (Alphanate) did not stop the AVM bleed..

So what do you think about spending some money and taking a look at the VWF gene? Does your research indicate that bone marrow stem cells, the immune system autoantibodies to VWF and Factor VIII explain some VWD cases or is it always traceable to that elusive gene having a missense mutation? I sometimes blame it on an errant cosmic ray but I also have had some small exposure to transition and rare earth elements when I grew YAG, ruby and yttrium vanadate crystals for lasers. (I was very careful with exposure) but who knows what Nd, Er and V can do with chromosomes. I also worked with high power, low frequency radio sources that provided heat to melt the crystal components. We used Iridium crucibles to hold the liquids at 3500 degrees F. Perhaps autoimmune diseases just happen. Perhaps there has to be a trigger. But you will find all kinds of autoimmune conditions on this site and lots of support.

John the elder- who grows flowers and ignores the Sword of Damocles hanging by a thread over his head but still wears gloves and heavy boots when working outdoors. (I don't juggle chainsaws either)