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Von Willebrand Disease (VWD) - Online Support Group

New member and newly diagnosed

Hello,
I’m new to group and just been diagnosed with VWD but my doctor has no idea as.to what type I am. I find this confusing as I believe I should know what type I am. Therefore I feel in limbo and uninformed which leads me to think all sorts in my head. So… I’m looking for a bit of advice as to what the standard practice is? I thank you all in advance and hope I’ve explained things correctly.xx
Faye

Hi Faye! I agree with you, I think it’s really important to know what type you are. I had to have genetic testing done for my doctor to accurately type me. My dad knew he had VWD so they tested me for it when I was a baby and determined that we were type 1, however when I was older and about to have surgery, I saw a new hematologist at a really big hospital, and she had me undergo the genetic testing and determined without a doubt that I was type 2M. that means that all my relatives (on my dad’s side) who have VWD have that same type. It’s my understanding from talking with my doctors that that is the case for most types of VWD (as in, whatever type one of you has, you all have), but I’ve seen some people on here say they have a different type than one of their relatives, so I could be wrong. Anyway, I have also seen a lot of people on here say that they were diagnosed as one type and then later found out they were a different type; I think it must be really hard to nail down what type you are without that extensive genetic testing? In my case it was really important that I knew what type I was because type 1 is often treated with DDAVP, but type 2M doesn’t respond to that treatment. My dad almost died from a nosebleed before we knew we are 2M, so it’s very important to know your type, IMO! do you know of anyone else in your family who has been diagnosed? it’s very uncommon for someone to be the only person in their family with VWD! But with type 1s and milder type 2s, I can see how people would never know they had it!

Firstly, Thank you for answering my questions. I don’t know of anyone in my family with VWD. My son has ITP which is a low platlet count which is the only condition related to VWD. I have doctors again on Friday and hopefully they’ll be able to answer my questions better. I feel I need some treatment as I’m bleeding a lot. Xx

Bless you as you go through this time!
I remember that the figuring out of everything was the most difficult time for me, I just wanted to KNOW.

But I agree with mjones89. I, too, had the genetic testing and in my family, I am the only one (we know about) who has VWD, but through the testing (they tested my parents, too) they found out that my mother is the carrier, though she doesn’t have it herself.
I am type 3 and that has been not only extremely important to know, but to make sure the doctors know, as well. In my experience, they tended to automatically assume that it’s all type 1, which could have led to some very bad results. So we had to keep informing them that I wasn’t what they thought - there I was 3, not 1 and that there are, actually types!
The ones who specialize in VWD, or learn about it, are very good, it’s just not something I think a lot of doctors deal with, day to day. So I would always recommend getting the testing, especially if you’re bleeding a lot.
Not only will it help you, in information, but it will tell you what treatment you need. It’s not a very complicated test, for the patient, but they have to do the specific test to know. Good luck to you! :slight_smile:

Thank you so much! The support on here is phenomenal I’m truly overwhelmed by the detail in your replies. It’s so nice to talk to people who understand and have valuable advice. My doctors have tested me 3 times now but the second time they asked me if I’d taken aspirin before the blood test, as the results were so low. So…I’ve been tested again (whilst still bleeding) and an waiting to see doctor on Friday.
My feet and legs go purple/blue in colour and become painful and swollen. This happens even if I stand for a short while e.g like taking a shower. I was wondering if this is related to VWD? Thank you xxx

You are so welcome!
It always made me kind of laugh (in irony) because there were SO many blood tests, while my own blood count was so low! Anyway, I myself have not had the leg/feet swelling problem you described. That does not mean that it’s not related, but it’s nothing I’ve dealt with, personally.
I think it’s definitely something to find out about, though. I hope you do, soon! :slight_smile:

Hello, quick update ivee seen the GP and have had the results back…and as I expected VWB factor is low again. However it wasn’t as low as before so Gp didn’t seem too concerned although I’m still symptomatic. She’s referred me to blood clinic so hopefully some treatment will be put in place. Quick question does anyone else’s face and neck go red after drinking? Also my heart pounds very fast.
Kind Regards
Xx