"Information is Power"
Providing Information on von Willebrand's Disease
and Links to von Willebrand's & Hemophilia Web Pages
"Information is Power"
Providing Information on von Willebrand's Disease
and Links to von Willebrand's & Hemophilia Web Pages
What Is Von Willebrand's Disease?
Von Willebrand's Disease (vWD) is the most common genetic disorder in the world (classic hemophilia is more well known due to its connection with the royal families of Europe). In fact, v vWD is one hundred times more common than classic hemophilia! It was discovered by a Finnish doctor in the 1920s, who named it after himself; later, Dr. von Willebrand discovered that the disease was linked to a missing blood factor, which assists with the clotting of blood. He named the factor after himself as well - von Willebrand's Factor (vWF). Unlike classic hemophilia, the disorder is not sex linked (autosomal), meaning that both men and women can have it, but some can be carriers only and not manifest any of the symptoms. VWD occurs when the body makes either inferior vWF or none at all. Other blood factors can be short-changed as well. Generally, vWD is divided into three types: Type I (mild), Type II (Medium) and Type III (severe). The lower the type, the less the symptoms will occur and the less strenuous they will be. There have been other types discovered over the years; they are identified at the Wikipedia listing.
What Are the Symptoms?
Usually, vWD shows itself by spontaneous hemorrhages under the skin, prolonged and/or easy bruising, and prolonged bleeding from even small cuts. Most internal hemorrhages occur in crisis joints - a joint (knee, elbow, etc.) that usually will be the first to bleed. Time for the bruising and bleeding to stop depends on the amount and quality of vWF in the blood system. Rough sports without adequate protection are not advised. Take care when visiting the dentist. And don't become the glass-eating geek at the circus.
What Are the Treatments?
Types I and II usually are treated with desmopressin, also known as DDAVP, a nasal spray, while Type III has a variety of blood factor products that put good quality vWF into the bloodstream, such as Kogen, Humate-P and Kogate. There is no guarantee that having a certain type of vWD will automatically call for the usual treatment; you must see a hematologist to be sure of your type, and then may have to carefully try several products to find the correct one for you. The recent medical advances make sure that products are much more clear of blood-borne infections than when cryoprecipitate was the only treatment.
Where Can I Find More Information?
The best national source for information is the National Hemophilia Foundation, which can give more detailed information than this site. They can send you the appropriate information on von Willebrand's Disease, plus information on any other blood disorders, local chapters and caregivers.
...So if anyone tells you that females don't have bleeding disorders, show them this page and give them that "I-told-you-so" look.
Please Note...
DON'T take this page as a diagnosis or medical treatment - I'm not a doctor, I'm a graphic designer whose fiancee happens to have vWD. She went through years of hell fighting not only this disorder, but general medical ignorance for years. If you have this disorder, or think you do, go to a hematologist for more details. Check out some of the other links for further information. Read up on whatever you can. DON'T take any answer even close to "you don't need to know" or "it's not important" - it's YOUR body. You should know how it works and how it's not working. The best way to maintain this disease is to get as knowledgeable as possible and take as much responsibility as possible.
Important von Willebrand and Hemophilia Web Links:
World Federation of Hemophilia
Wikipedia.org Listing - von Willebrand Disease
AHF, Inc. - a bleeding disorder management company]
Hemophilia Galaxy - run by Baxter Healthcare
Other Health & Medical Web Links:
Multimedia Medical Reference Library - Indices
RITA Medical Systems - Manufacturers of venous access devices
OnHealth - searchable site for health information
Legislature Links:
Thomas - Legislative Information via the Library of Congress
State and Local Governments Information Listing
Wired Magazine Interview - "Bedside Manna"
Dr. Tom Ferguson is an online doctor who espouses patient empowerment and says that the Internet is one of the greatest tools in accomplishing that goal. Joe Flower interviewed him for Wired Magazine issue 5.03. It's a great article for anyone who's had problems with a doctor having a "God Complex". Thanks to the folks at Wired who rushed to get this online!
This Page Didn't Change In Ages. What Happened?
First, a big whopping thanks to those of you who have e-mailed us about the information you've found here, and the ways in which it's helped. We have been stunned by the number of letters, as well as their location - all around the world. Thank you all for your support.
And to everyone, a just as huge whopping apology for not keeping this website more of a going concern. We've probably lost our standing as a decent website, and the redesign and the extra links are my way of saying "we're sorry, and I have no excuse for putting this off since I now have a laptop and WiFi." Over the next few weeks more websites will be added to the others above, and hopefully I will have time to add to the links. I'll be looking at exactly how this site can continue to help the vWD community, or else we'll still be here, giving out simple advice in plain ol' English rather than doctorspeak.
Our job here has been to keep the website simple, with few graphics, and emphasize what everyone wants to know. Most people who come to this page come after being diagnosed with vWD and not getting a decent explanation from the doctor, or at least a confusing one. We're here to tell you that 1) you're not alone, and 2) don't despair. We want to continue to do that job to the best of our abilities - and, of course, time permitting.
To answer the question about the non-changes to the page, we've been very busy for the past few years. We actually got MARRIED in March of 2002 and have been setting up house for the past few years. Chris gets ill from time to time, and I do freelance more occasionally, so this page has taken a back seat for a while. To prove that an actual marriage took place, here's a shot of us about fifteen seconds after the "man and wife" line.
So, to prove I'm serious about this...
Page Last Updaed 6/24/07