Seek Advice on Von Willow Bran Blood Disorder

Hi H., I just wanted to ease your mind a little about Von Willa Brands Disease. I was diagnosed with this when I was 9 years old. I am not sure what stage of the disease I have but will reasure you that it has not caused any serious problems in my life. I have had many surgeries in which they have to give me a blood cloting factor prior to, but with this I have had no complications during surgery. I have also had two beautiful children and again had minimal problems. One thing I would recommend is getting some sort of medical alert necklace or bracelet for your daughter just in case she would ever be in some sort of an accident where there may be a lot of bleeding. I also for my own sake carry a piece of paper in my wallet that tells that I have Von Willa Brands Disease and list exactly what this is. One other peice of advice is I recommend that every time you visit the hospital for any reason you check to make sure that they have this listed in their computer system. After years of having this I had one minor surgical procedure done at the hospital and when I was in the recovery room I asked why they had not given me the ADDVP and they had no record of me having Von Willa Brands Disease. Good Luck with everything and I hope this eases your mind a little.

H.,
I had Von Willebran as a teen. I think I was diagnosed around 17 also. Basically, its a blood condition makes it more difficult for your blood to clot and so there is a risk of hemorrage. In case of a surgery, the doctors will administer something (In my day, it was called Plasma but I think that term is outdated now) that will ensure proper clotting. My mom made me wear a medical I.D. for awhile, just in case of an accident. You have to make sure that you tell your dentist about this condition too because even small dental procedures can result in too much bleeding.

Here's some good news though! I think you can either outgrow this condition or at least it declines in intensity over time. I say this because I don't have it anymore! During my last pregnancy, I went to see a hemotologist and he tested me because I was due to have a C-section and what he found was that my levels were normal!

Good luck. Try not to worry. Let me know if you have anyother questions. I know this disease is pretty rare.

L.

Hi H.,

First off, it's spelled: von Willenbrand and it is a blood disorder affecting how well the body responds to injury to form blood clots. If your daughter has the disease, it's likely she bleeds for long times following injury, gums bleeding, lots of bruising easily/long lasting.

It is not a crippling disease in the sense that she can live a normal life with it, just has to be monitored as well as probably should not participate in contact sports. This is for her doctor and you to determine.

here is a link to the government website about the diesase. i would think you've had a hard time googling it! http://www.nhlbi.nih.gov/health/dci/Diseases/vWD/vWD_What...

good luck!!

My daughter was also diagnosed with von Willebrands disease just this past winter at age 13. The pediatricians in the York, PA area did not seem to think this was a "big deal"!? We were finally referred to Johns Hopkins and saw a pediatric hematologist there....and sure enough, she does have VWD. I would highly recommend the doctors in this dept at Hopkins (not sure where you live)Childrens center. They told me this is actually quite common in teenage girls and there IS a possibility that she will outgrow this later in life. Arm yourself with knowledge! do a lot of reading on this disease and if you don't like the treatment she is receiving now, insist on seeing a Pediatric Hematologist. I know they have this specialty at Hershey Medical Ctr also, however it was a very long wait to get an appointment there. I was very very pleased with Hopkins. Good luck to you and to your daughter!

Do you mean "Von Willebrand disease"?