Has anyone heard of this dieases? I've been having clotting problems for as long as I can remember. From long lasting regular nose bleeds as a child. Up til having 4-5 month long periods as a preteen - teenager. I wasn't told until last year tht my problem was called von willebrand's diease. In my town all the doctors have told me that there is no cure. But in another town doctors are talking about possible cure? I'm just wondering if i'm getting mislead?
From what I've been told...there really isn't a cure... but their are treatments.
Hi, I'm KT and I bleed like you. My childhood I had nosebleeds nearly every day. I've always been anemic... and since I started having periods they were always at least 7 days with extremely heavy bleeding everyday. It wasn't until 2008 that I started bleeding for longer amounts of time... the summer was 4 weeks of bleeding then 3 weeks in the fall...and then in November of 08 I nearly bled to death... I was in the hospital had to get surgery, blood transfusions, had to go on iron treatments after wards.
I met with a hematologist.. I was diagnosed with VWD type 1. There are 3 different medicines to stop major bleeding. Stimate is a nasal spray... generally works great with Type 1's, not so great with Type 2's, and not really at all with Type 3's. (all this info is what I heard from my hematologist... I'm just a regular person... so don't take it as if this is 100% accurate, I'm not a DR) Then there is Amicar which I believe is a pill. Finally, there is Humate-P which I believe is an infusion. These will not fix VWD they will treat bleeding episodes though.
My Dr. recommends being on oral birth control. I'm having huge issues with that since I want to conceive. He said it is the best way to "treat" VWD. I beg to differ...when I was put on BC that's when I bled most heavily and nearly died. It wasn't until I stopped taking them that I stopped bleeding... Apparently I have some form of reaction to BC, that is not normal.
All this to say... find a hematologist... you'll probably have to be referred. I went to the Hemophilia and Thrombosis Center in my state... perhaps every state has one? They know the disease and can help you a lot more than rural town Drs and ones that don't deal with this disease often.
Firstly, hello and welcome to the group!
I have VWD Type 2A.
I live in the UK so my healthcare situation is differerent to you but I'm certainly not aware of a cure as such, just different treatments to try and control symptoms.
Having a good haematology consultation I thinkl is the best option, there are so many variations on what works best for people. DDAVP for example (an artificial clotting agent often given as a nasal spray) doesnt have any effect on me but works great for my Father, who also hase VWD 2A.
Hope you find some answers that way
l have Von Willbrands disease and no this no cure but their is treatment , also it is very very important before you have any operation or dental work etc you let the health care professionals know you have this disorder
I have a cousin that has this disease. She is starting to bruise more and more. She would like to talk to someone that is going thru the same thing. Can you talk to her? If so what is the best way to reach you?
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