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Jersey Shore, United States
In case any of my friends or family members actually read this Blog, please consider all Names, Characters, Places and Incidents to be the product of the author's imagination and any resemblance to actual persons, living or dead, events or locales are entirely COINCIDENTAL...Muaaah!! Now, really, about me: I bring the crazy wherever I go, so I've been told...I make fun of myself more than anyone else ever could. I hate: the awkward silence in elevators, watches with no numbers, picky eaters, Cancer and legalism. I love: coffee, stalking Hugh Jackman, my Spanx, COMMENTS, sarcasm and writing: Middle Grade, NA, YA Paranormal and Urban Fantasy.

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Friday, April 25, 2014

A-Z Challenge Letter V is for Von Willebrand

Today I wanted to talk about von Willebrand. Is he some sort of conductor or musician? Isn't that a type of car?  No! Erik von Willebrand is the name of the Finnish doctor who discovered the bleeding disorder that I have. Since it is not commonly known and a lot of people ask me about it,  I thought I would take the opportunity to explain a bit about it.

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.

12 comments:

  1. I'd never heard of it before. Glad they figured out what was wrong with you before surgery.

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    1. Yeah, me too! It takes some prep work before I have any procedures, or go to the dentist, but not that I know what I am dealing with, I can live a relatively "normal" life. (If you could label me normal, LOL)

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  2. Is this hemophelia with a different name? Whatever it is, I'm so glad you were diagnosed and now have it more-or-less under control. Thank you, Dr. von Willebrans.

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    1. Not exactly. Von Willebrand disease results from insufficient, abnormal, or absent von Willebrand factor. Hemophilia results from a deficiency of clotting factor VIII (hemophilia A) or clotting factor IX (hemophilia B). Although they are very similar and quite often, lumped together. I see a hematologist who treats both diseases. Often, our treatment is similar. Like the medicine/transfusions I need to get are the same as someone with hemophilia.

      Sorry if I sound like a PSA! (LOL) It's only because of necessity I read up on and researched my illness so thoroughly.

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  3. This was a very educational post. I have never heard of such a diseas and as far as I know, do not suffer from it. But all the same it is good information to have for whatever may happen in the future. Thank you for making me a little less ignorant than I was yesterday =)

    LittleCely's Blog

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  4. Fortunately that wizened doctor was there! You most likely would have had a hysterectomy. Knowledge is power, esp. in your case.

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  5. Glad that doctor was there when you needed him most. Not a disease I have heard of before but hopefully your diagnosis means other members of your family are better informed.

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  6. first time I've heard of it

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  7. Good thing a doctor who knew what the heck it was was there, most of them aren't all that great now a days.

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  8. Wow, I've never heard of this. I'm glad you were correctly diagnosed, though, so you could get the proper help. Nothing worse than not knowing what's going on with your body.

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  9. Fortunately, I have never heard of this. Sorry to hear you have had to deal with it, but knowledge is power. Glad you got a good diagnoses. Hope you can always keep this under control.

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  10. I have never heard of this before - what a scary delivery you had. I'm glad the right doctor was there at the right time.

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