Von Willibrands Disease

[WDWDancer]

Does anybody have this or have know of anybody that does? I know its a blood disorder; the blood does not clot and you bleed lots.

I recently got diagnosis over the phone from my doctor that I have Type 2 Von Willibrands. The phone call came as I was boarding a plane to go to California to take my exams for Law School!!!

I will be setting up an appointment with a hematologist when I get back just wondering if anybody has any experience with it so I stop "Googling" it and driving myself crazy

 

[DisnyMama]

We found out that my stepson who is now 28, happily married and works as a Pediatric Respiratory Therapist has VW's when he was 10 years old and in need of hernia surgery. From what I remember if he has to have a procedure or surgery he has to have special bloodwork and injections done prior to the procedures to prepare. He has always gotten bloody noses from time to time but he knows how to get them to stop. He played little league baseball and high school football so he has not had to alter his life in any way.

I hope that the doctor gives you all the info you need so you will be well informed. My best advice.....stop googling! You can drive yourself crazy. I know firsthand so just wait till you see the hematologist. I realize this can be a difficult thing to do but it is really in your best interest.

I'm wishing you all the best,
Shannon

 

[tzolkin]

I have very low platelets, but was tested for Von Willebrand and several other disorders and don't have any of them. My sister does have Von Willebrand, but her platelet counts are higher than mine.

I am a very healthy person (no surgeries, illnesses, broken bones, etc), so the only issue I have ever had with the platelets is giving birth. My platelet levels are checked regularly throughout my pregnancy and several times during and after my labor. The hospital also must have platelets and blood on hand during the delivery, but I did not need them and had relatively normal bleeding with my second and third babies.

This does not affect my daily life at all. (I do bleed a bit when I get my teeth cleaned ) It's just something doctors must be aware of if I ever need to have a surgery or anything.

My sister bruises very easily and has issues with severe menstrual bleeding. No problems other than that.

 

[olena]

Actually, I know lots of folks with bleeding disorders. DH and I are working a celebrity golf tournament tomorrow to raise money for research. I'm very involved with my state's chapter of the National Hemophilia Foundation. They have chapters everywhere and have been the BEST resource for the bleeding disorder community. My chapter provides all kinds of services like social workers, support, non-profit pharmacy, summer camp, family camp, scholarships, educational programs, outreach nursing, etc. You should hook up with the chapter nearest you. Chances are that you aren't the only one in your family with VWD.

http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=51&contentid=193