It is not a rare disease, just wildly misdiagnosed. It is caused by a defect or deficiency of a blood clotting protein, called the von Willebrand factor. There are three different levels/degrees of severity, one being the mildest form. In type one the factor is lower than normal, and/or levels may be reduced. In type three you may lack the factor all together and it is the most serious form of this disease. Von Willebrands is familiar. Which means it is inherited and passed down from a family member. That is one of the reasons why it is very important to know your family medical history.
It's funny, I went 28 years without being diagnosed. It wasn't until my first "trauma" that I was finally diagnosed with this disease. What was my first trauma you ask? That would be the fun-filled delivery of my first born, Miss Faith. I bled uncontrollably after delivery and had complications. At first, the young, good-looking intern and on-call OB-GYN doc that they tell you-don't worry you will only get him if there is some kind of disaster and your regular doc is dead- well, I got him. Although he was very nice, he had never dealt with or saw someone bleed like me before. He thought I had a cervical tear and started to prep me for surgery. Thankfully, my old, ugly but wizened and just-about-ready-to-retire or die doctor who I happen to adore, returned in the wee hours of the morning. He was able to figure out what was going on and stop my bleeding.
So, here I am, 12 years later. I'd like to think I'm a little wiser about this disorder. I found out (through multiple blood tests and specialists- not only do I have this disease, so does my sister, my mother, my Auntie and my cousin all on my mom's side of the family. My girls have a 50/50 chance of me passing this on to them too. ) I am so thankful I was the first to be diagnosed. Especially since my cousin Lauren is about to have her first baby. Knowledge is power and I am so very grateful she is well informed and prepared for her delivery.
Have any of you ever hear of von Willebrans disease? Any of you suffer from some form of bleeding disorder? Have you ever suspected you may have a bleeding disorder?
I'm not a doctor but in case you suspect you might have a bleeding disorder, here are some of the more common symptoms of von Willebrands: lots of bruising or prolonged bleeding, recurrent nosebleeds, bleeding after brushing of teeth or tooth extractions, women with VW have increased severe menstrual bleeding and deep joint/body aches.