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von Willebrand Disease Guide

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Von Willebrand Disease

By Mary Kyle Blogger
 
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Von Willebrand disease is treated with a medication such as desamino-8-arginine vasopressin (DDAVP), which is designed to increase the levels of the von Willebrand Factor in the blood thereby decreasing the risk of excessive or abnormal bleeding. Not all forms of von Willebrand disease respond to this treatment so it is important to know which type you have.

Because of their increased risk of bleeding, as a general rule, persons with von Willebrand disease should avoid common anti-inflammatory drugs such as aspirin or ibuprofen unless directed to do so by their physician. In addition, persons with von Willebrand disease should take precautions before any surgical or dental procedure that might cause bleeding and make certain that their physician is aware of their condition. Your doctor may prescribe Alphanate (antihemophilic factor), other factor VIII solutions or plasma before a surgical procedure in order to decrease the risk of excessive bleeding or hemorrhaging during the procedure.

If you think that you might have von Willebrand disease, you should seek the assistance of a hematologist experienced in the diagnosis of this disorder.

Sources:
Von Willebrand Disease, ADAM, Inc., 2009, https://health.google.com/health/ref/Von+Willebrand+disease

Von Willebrand Disease?, National Hemophilia Foundation, 2006 http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=182&content...

Von Willebrand Disease, National Heart Lung and Blood Institute, May 2009, http://www.nhlbi.nih.gov/health/dci/Diseases/vWD/vWD_WhatIs.html

Add a Comment4 Comments

Mary Kyle Blogger

Boy can I relate to what you said about people thinking you were crazy. Before I found a doctor smart enough to connect the dots and figure out that I have MS, I actually had one that refused to see me anymore because he thought I was a hypochondriac! I've learned to take charge of my own health since having that experience. I'm so glad that you've done the same and that you learned it at a much younger age than I did!

I know that starting a family is a big decision with vWD. You might consider submitting an "Ask" and see if anyone else on the forum has been through pregnancy with vWD. Someone may have some insight that would be helpful to you.

Mary

January 18, 2010 - 5:44pm
Mary Kyle Blogger

Hi Anon...I can only imagine what it must have been like to receive a diagnosis of vWD, especially when you aren't able to find any information out there to help. My niece has a very rare autoimmune disorder (only 500 children worldwide are affected) and we've faced the same thing as a family so I can empathize completely.

The article above only touches the high points of vWD. In researching for the article, I found a great deal of information at both the National Hemophilia Foundation and the National Heart Lung and Blood Institute. If you follow the links above, you'll find a great deal more information on vWD than what I was able to present in this article.

I believe that knowledge is a powerful thing when it comes to making medical decisions. I was fortunate enough to have a doctor that insisted that I educate myself and participate in the decision making process in my own care. Being able to talk to the doctor intelligently and present him with information has transformed my approach to my personal healthcare. I encourage you to do the same in managing your vWD.

You may already be doing this but one of the things that I recommend is to do an internet search at least once a quarter to see what is new on the horizon for your disease. Many of the medical and scientific journals publish quarterly and this is a good way to get the latest breaking news and information on research and possible new directions in treatment options. The internet has really been invaluable in giving the average person like you and I access to a wealth of information.

I wish you great health. Mary

January 18, 2010 - 3:00pm
EmpowHER Guest
Anonymous (reply to Mary Kyle)

I absolutely agree. There was the time, my friends thought I was crazy or exaggerating. Now I can send them links. I was lucky to some degree. I was supposed to have surgery and while prepped for surgery (after having had many blood tests) the surgeon looked me in the eye an said his gut told him he could not do this surgery. He conference called a bunch of doctors and sent me to a top Hematologist. The hematologist discovered my blood had like ZERO ability to clot. I looked like a badly bruised banana. I was 18, and with no parents. I got scared out of trusting doctors. A litle while after I fell on ice and had one very BLUE knee. The doctor told me to take aspirin. I asked if she was "literate"...it said "NO ASA" in flourescent letters on my file. She was offended. LOL. I resorted to natural medicine. But now that I am at an age I think about having children, and live a hectic professional life, and now living in the UK with amazing healthcare...I often think about going back to the allopathic world. Again...thank you for the info! Every bit of info I find makes me feel happier.

January 18, 2010 - 3:30pm
EmpowHER Guest
Anonymous

I think that it is fantastic that there is so much more info about vWD. When I was diagnosed there was barely anything. So little that the medical field did little to help me. I have the most ridiculous menstruation cycles and was scared of what the doctors would recommend. Its encouraging to see so much more info being generated and research being done in the US and UK and the acknowledgement that it can have a very strong impact on a women's quality of life.

January 18, 2010 - 10:45am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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