Von Willebrands Disease

Does anyone on TS have Von Willebrands? I went to the Doctor with my mum for support as she was getting results back from blood test, they suspected she had it but now its offical and its genetic and because of how I bruise so easily there is a 100% chance I have it to. So instead of just being there for support I left with a blood test form to get test done. I told Mum I am never going to be support again jokingly.

If anyone has it, how bad does it effect you and does your daughters have it?

 

I not only have VW but I am a severe hemophiliac too (<1%). Thankfully, the boys did not inherit the gene for VW. I have three sisters, all who carry the hemophilia gene and one that has VW too. She has to be treated with stimate (or something like that - nose spray) when she bleeds. I have a page on our website dedicated to hemophilia but not VW... I just found out a few years ago I had it (after complications with a knee replacement).

We had no daughters so I can't answer your question there.

Cliff Watson

 

HERE is a good site for info on bleeding disorders and has good information.

I believe VW is one of the more common ones.

I dont have it, but have a mild case of another type of bleeding disorder (Factor VII). It has similar 'effects' of VW and both can vary in severity depending on the person.

For me: it means that any tramatic injury or large surgery requires me to have replacement factor or FFP (fresh frozen plasma). I get nosebleeds and bruise easy, but it does not change my everyday living in anyway. I did not find out until I was 22 due to complications of taking a medication.

My daughters were tested at birth and do not have it, although they *may* be carriers.

I suggest your mom (and maybe you) wear a medi-alert bracelet. If you get in a car accident or get hurt badly they will need to be aware of it immediately.

 

Thankfully the Doctor we see his wife has it so he knows all about it (not thankful she has it, but his knowledge) I will have a look at your website in a moment Do your boy's have hemophilia??

Thanks for that suggestion, i will tell her about it.

 

Codie, just wanted to send u lots of hugs to you. Let me know how you and your mum go :hug:


**Sent via Ipod Touch

 

I wont know for sure until after I go get tested on Monday and we recieve the results back, although we (Dr) already are sure I also have it because of the bruising and how much I bleed when cut. It wont change anything about me though.

 

Ok good luck. Remember I'm here always if u need to talk or just need a friend :hug:

 

No the boys do not have it or vW. Here is the URL for the page I put up about hemophilia: http://www.watsonworld.org/hemophilia/index.htm

It has a Flash presentation that I did for a HS biology class that explains how hemophilia is passed on and the possible combinations to pass it on. vW is a different story, it is passed on more randomly I think. Since we didn't have any daughters and the boys didn't get the vW gene, the buck stops with me

Keep us updated with your tests!

 

That was a interesting presentation, a good way of looking at the details.

I shall, I have to go tomorrow unless I chicken out, really hate needles and the look of blood in general But should know soon after maybe a week or two.

 

I went 2 weeks ago for the bloodtest, today finally got a phone call back and my doctor wants to see me, and the soonest he could do it (he doesnt work every day) is Thursday, since they wouldnt give the results over the phone. When I told mum she goes well the results are positive as if it was negative they would of told you over the phone. I asked on the phone to if they could just give me the results and they said no. So no suprises on Thursday just to find out how bad it is. <_<

 

:hug: Some doctors won't give any test results over the phone, positive or negative, so you never know. I'll be hoping for negative results for you.

 

man i posted a reply and it didnt work, had to try again. I was thinking about you today codie wondering whether you have got your results yet. I hope its good news, hang in there mate. Im thinking of you :hug:

 

This doctor does normally give out results, I recieved last results I needed through the phone.

 

They rang me this time after I called twice last week, now my mother can stop harrassing me to call and see if they are in. Ignorance is bliss I didnt see that you responded thats why there are two post

Good news will be that its low not high risk!

 

That's ok I don't mind that there's two posts I'm glad it will only be low risk. Keep me updated mate. xx

 

I meant that good news would be its low risk, bad news would be its high. Sorry should of made it look like that. Ill let you know on Thursday

 

I offically have been told I have it. It will get worse as I get older he said. It effects my periods (which he wants me to go on the pill for) and when I have children it will have to be watched. 50% chance I'll pass it on.