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Shellipoo 02-18-2005 10:03 AM

Von Willebrands Disease? Testing?
As a child I had problems with bleeding.....heavy nose bleeds, continuous bleeding after dental work....ect. Now as an adult, while the nose bleeds have ceased, I still do bruise fairly easily and my gums bleed just from brushing my teeth. Also after a recent surgery the nurses noticed that I bled alot after an injection and really bled alot after IV removal. Neither of my parents have Von Willebrands Disease.....but my aunt and a few cousins do. Would it be worth it to get tested for this? Even if my parents don't have it? How much does testing cost?

Thank you for any thoughts.....

inimicalducky 02-23-2005 11:29 AM

Re: Von Willebrands Disease? Testing?

I have Von Willebrands Disease and like yourself had very heavy nosebleeds as a kid, LOTS of brusing, excessive bleeding after dental work and tonsilectomy, etc.

I'm 23 now, and I don't have nosebleeds anymore, but I do still bruise pretty bad. I do think you might need to be tested, mainly because if you are in an accident, need some dental work done, need surgery, having a child, doctors will need to know if you have VWD and also which type so they know how to slow down/stop excessive bleeding you may/may not have. Just 2 summers ago I had my wisdom teeth pulled and needed to be placed on Amicar before/after the prodecure to make sure bleeding stopped, and the blood clotted properly. My VWD is not that serious, more of an annoyance than anything, but still precautions must be taken. I just have a slight Factor VIII deficiency and low platelet count.

I'm not quite sure of the cost, since I had the testing done when I was about 10 or 11, but I'm sure you could check with your insurance. I'm sure its probably covered. Neither my parents have symptoms of VWD either (neither have been tested either), but I and one other sister do have it.

Hope that helps some!

pgta5 03-09-2005 02:01 PM

Re: Von Willebrands Disease? Testing?
I was dx'd at age 30 after my son experienced an acute illness which affected his platelets. He always had bruising and nose bleeds. I never had any bleeding problems other than very heavy periods. My family also believed they didn't have VW but my father was dx'd at age 65 b/c of our experience.

From what I have been told and read...VW can be an easy dx's to miss. Also as you get older you levels tend to increase. Other factors such as exercise, nutrition, stress can affect your levels.

We went through a hemotologist who was a specialist in hemophilia and other blood disorders. When my father initially was tested through his GP they said he didn't have VW..well, they hadn't ordered the correct battery of tests so he had only his Factor VIII checked and nothing else...that was in "low to normal" range but the other antigens/factors were lower.

If you are going to pay out of pocket the tests can be costly. In the states it is right around $300-500 for the bloodwork plus whatever the dr charges for the consult (usually around $300 as well.)

I agree with the above poster...knowing could save your life in an emergency. My father had colon cancer and had the dr not know he said he could have bled out during surgery. They had to pretreat him and post-treat because of the nature of the surgery. He did however have open heart surgery and several orthopedic surgeries as well as dental surgeries with no problem.

BTW I have never needed treatment neither has my son. Thanfully!
Good luck!

robin929 03-14-2005 05:53 PM

Re: Von Willebrands Disease? Testing?
hi I am a new member but read your questions. My daughter who is now 14 was just dx'd with vw. Our cost before insurance was $1200.00. My daughter was given a prescription for a nasal spray called stimate which she takes every month when her monthly cycle starts,which for her is twice a month,even on birth control. From her pediatrician we were referred to a gynocologist, then referred to a pediatric hemotologist. She will recieve a medic alert bracelet and has a letter that she needs to carry with her at all times just in case of injury. Even a broken bone could be a serious injury when you have vw. I recommend getting tested if you are concerned. I myself do not have the symptoms that my daughter has but my mother does. Good luck. and take your health seriously. R

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