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Von Willebrand Disease (VWD) - Online Support Group

Any advice for MomRSA about Blood Type factor and these symptoms?

@MomRSA

Hello and welcome to Living With VWD! I am not sure who you are referring to when you mention your “dd”, but hopefully making a post where you explain some of these symptoms can allow our many helpful members to provide you with some useful feedback! Also, it might help to use the Search Icon (top right corner of the red bar) to specifically search for the keywords describing these symptoms among some of our older topics/discussions.

Best of luck and let me know if there is anything I can do to help!

Hi I refer to my darling daughter who is 13. She is almost 14. She has had some weird symptoms since Jan. Been to the gp quite a couple of times.

Once had very weird dots under her front arm. it was very fine red dots. But only about 10 cm by 3 cm. She said it was a little sore. Next day it looked like a bruise.
Then she started menstruating. It would not stop for 3 weeks. Then started again after just 2 weeks, for another 3 weeks. Not that heavy all the time but still quite visible. I took her to the gp as this was not normal to me. Dr prescribed her cyklapron. To just lessen the bleeding.
Then 2 weeks ago she just got up from a chair and her knee is sore. She can not straighten it. Went to the dr again. He want her now to go for a camera in the knee and possibly scrape it. But I am thinking she may have a bleed in her knee.
I am thinking that she might have a milder form of VWB, that we just never picked up as she was not a child that hurt herself often. She had a tonsillectomy at age 3 but there was minimal bleeding. I am thinking that a tonsillectomy is more cauterisation of the wound and that is why it did not bleed noticeable for long. The problem is that in the RSA the test for VWB is prohibitively expensive. And you have to repeat it a couple of times. So dr’s are also not willing to go that route too quickly.
I am thinking the knee is probably a bleed on her knee itself. I was worried a couple of weeks ago as she was going to get braces and the orthodontist mentioned extractions might be needed. I was so worried as I knew we would have to test for VWB before any tooth extractions could take place. But luckily it was not necessary.

But now I am still stuck with this problem. Also somewhere I saw they say that the blood type could be a factor in VWB. As far as I know she is A-. Anyone know about the blood type factor in VWB?

I see - sorry to hear about the trouble she has been having, hopefully one of our members comes upon this post and is able to share some relevant insight on these symptoms. I will change the name of this topic to hopefully draw some more attention.

Hey MomRSA,
Have the dr’s suggested another cause other than VWB? As I have found, with some conditions it may be easier (and cheaper) to initially do other test to eliminate those conditions. Once those test prove one way or the other that the issue is not those conditions, then it must be one of the remaining conditions which would include your suspicions of VWB. So rather a process of elimination to reduce costs than multiple expensive tests to prove positive.
The issue I see with this idea though is that the multiple tests for a process of elimination may cause further problems with bleeding. And even then the extra expense to confirm VWB may still be required.
I apologise if this just adds to the confusion, it is not my intent.

Merl from the Moderator Support Team

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Hi All, It has taken a year, but last week I took her to the state hospital for just the blood tests first. We do not have the results yet, the Dr. has to review and authorise the results first. I am very anxious about what they will find. They also mentioned that there will still be more tests and processes etc before we even know which meds will be best for her. Also genetic counselling. I have a younger son and I am really scared he has it too. He has some very subtle signs. I am really wondering how this is going to turn out. We have so many chronic conditions in our family already. Please pray for us.

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Please do let us know of the outcome of the tests. Having a number of chronic conditions in the family already I would suggest you need to wait before going down the ‘worst case scenario’ lines yet. I can completely understand your trepidation and waiting is never fun, but please wait until you have a confirmed diagnosis. They may come back with a differing diagnosis which may well be a more easily manageable condition than you envisage.

Merl from the Moderator Support Team