Hi there,
my name is kristina and I am from california. Both my boys have this and so does my mother in law. I have always been told that one of the things about von whilderbrans is that your platlets will work fairly normal sometimes and not normal others. With my kids I have always just taken the extra procautions when needed since you don't know when they are working or not. The same thing with my mother in law. Any time she has had a surgery they have a hemotologist there and they consult with him pre-operatively and sometimes there is medications to take before or after surgery to help increase the effectiveness of the platlets.

One of the things that has always bothered me is that they believe that there is a factor in my mother in laws blood (possibly what caused the von whilderbrans) and that my father in law must have the same gene just resesive or something like this which caused my husband to be born with an even more rare and devistating blood dissorder. Hwas born with glanzmans thrombasthenia which only about 18 or so people have in the us and canada and with this disorder his platlets are there, just on average 97% don't work. We have been told that this is one of the things to be concerned about in the future with our children and there future partners (that they could have a child with the same problem as my husband).

My best guess is that your problem didn't actually go away, but that your platlet function has just been more functional. I would definately contact a hemotologist to know more specificly. But I have always been told this is a life long deal, not something you can just get over.

Sorry if this isn't exactly what you hoped for.
Good luck

Thanks for the reply. Funnily enough, my 14 month old son was tested last week and I am awaiting a reply but so far mine is gone. So I guess we'll see.

I have von Willebrands too. I was diagnosed last year but I always supected before that I might have it because I've always bruised really easily, and my sister was diagnosed with it a long time ago so I thought I might have it also. Luckily it is pretty mild for me, my sister's is a little worse so she has to be tested before any medical procedures to check her clotting time. I think our mother probably has it (she also bruises easily) but she's never been tested...

Does anyone here use a medical ID bracelet? My hemotologist said it would be a good idea to get one so I did but I'm not sure if it's really necessary since I have the mild form.

i dont think youd need too use a medical ID braclet .. im only 13 and i dont have one

Hi my son (who is 4)has von willebrans.He got diagnosed when he was 2.My dad has it .I dont but have a factor 11 defiency which josh has 2.My other child who is 18 months has been tested and they said he has not got it.I have been told he will have it 4 the rest of his life which was a shock.He has had blood transfusions because we live in a small town and the hospital didnt know what it was.Everything sorted now and he gets proper teatment.Diseases get better when you are pregnant.I am epileptic and that dissapered in both pregnancies but came back.The docs told me there is a 50 50 chance my children will have it.I would like to meet other people with the same problems.Feel free to message me.Hope this has been helpful.

I am a 32 year old mother of four. I was diagmosed when i was 12. the first 2 years after i was diagnosed i spent alot of time in and out of the hospital recieving plasma. I was told that i would never be able to carry a child to full term, guess i proved them wrong! I had complications with delivery with 2 of my children so i say 2 out of 4 isnt so bad! I suggest to anyone who may be pregnant with the disease to talk to her doctor about doing a bleeding time prior to delivery.

what are the causes of mega platlets?