Von Willebrand Disease Support Group

I was so glad that there is a support group for von Willebrand's. I am hoping to understand more about this condition from others whom have to deal with it. I have noticed that now that I am getting older, it is getting worse in some ways. I have yet to meet a physician I could discuss it with. I was in the Emergency room with a kidney stone a few weeks ago and the doctor was going to send me home on Motrin for pain and I told him that I did not take NSAIDS because of my von Willebrand's. He said, "what difference would that make?" I didn't feel like giving him a lesson but he proceeded to try to discredit my "claim" to this "benign condition" that he assumed that I had diagnosed myself with. This is completely typical of the attitude I always get. They want to know what your medical history is and then they act like you are a hypochondriac idiot. My hematology studies were performed at Vanderbilt University Medical Center, repeated to confirm. So anyway, now that I have worsening symptoms, it will be nice to know that there are others out there that understand.

Hi there,

You are definitely not alone. With exception of Andrea and myself I have not had alot of luck with doctors understanding this disease. Yet, they want to test you for a bleeding disorder based on excessive brusing & bleeding and when they get the diagnosis they don't have a clue about this rare disorder. How funny ! If you want to char I would be glad to share our experiences with educating ourselves on this disorder.

Botat34652

Yes, I would really like to hear your experiences! Thanks so much for your response.

txedwina

i would be interested as well about all details, because my 26 yr old daughter was recently diagnoised. they said she had the mildest form, but she brusies terrible if you just look at her, very severe headaches, unbelieveably heavvvvvvvvvvvvvvvy periods. she has little red spots come up on her neck and trunk from time to time. need info.

Hi there,

I too have a mildest form of VWD. I am a 33 yr old mother of three daughters, 13, 9,8. I had a hysterectomey at 29 yrs old due to severe bleeding during my menses and other gynecologic issues. I bruise vey easily eben if you pinch me I would bruise immediately. I have tiny red dots on my trunk, back, and arms. If you have not already see a Hematologist (bleeding disorder doctor) they really don't know much about this "rare" disorder. The doctor recommended that I have take a bleeding medication before surgery and I would recommend carrying a emergency card in your wallet just in case she gets in a car accident. I am still trying to locate addt'l doctors..I have a good friend who is now in her 50's who was initially diagnosed w/ VWD and actually has a platelet disorder that is a much worser case of the VWD. I will be glad to let you know what I find out. Good Luck !

THANKS SO MUCH FOR THE INFO. ANYTHING ELSE APPRECIATED.

What I could advise is that if your daughter has heavy, heavy menses do not opt for birth control that makes the period stop. I went on Depo-Provera Birth Control for 2 yrs straight not knowing that I have a bleeding disorder and when I went off the shot I bleed purfusely and that's when I set up my hysterectomey. There are medicines she can take to control the bleeding and will save her time and freedom from unneccesary surgeries. This disorder is hereditary I might add. I have not had my children tested yet but will say that even though your daughter has a mild case does not guarantee her dependents will. This info is from All Children's Hospital in St Petersburg, Fl. Let me know if I can provide any more info.

Hi botat34652, I was reading some old posts and I noticed that you mentioned carrying the Emergency Medical Condition card in your wallet.

After living with vWB all my life, I finally got a medical id bracelet. I had to go to the ER with a kidney stone recently, and the doctor was going to put me on NSAID's for the pain. And I said, I don't take them because they make the whole bleeding thing so much worse. And then he said some other things that let me know that he did not have a clue about the vWB. Last straw. I am paranoid now that if I were bleeding, like from a car accident, that no one would know what to do.

As a health care professional, I know that the MOST effective thing to have is a medical id bracelet. The first thing they will look at is your arm in order to start an IV.

WalMart has an inexpensive one that opens up and you put the information inside, or there are websites that you can get fancy jewelry ones. I highly recommend it. Peace of mind.

Have a blessed day,

txedwina

Hi there,

Thanks for the info I greatly appreciate it !

Can you give me some health info on VWD ? I have low normal ferritin at 25-19 should I keep an eye on it ?

Hi botat34652!

Glad to help in any way. Here is a link to a good, right to the point article.http://www.cmaj.ca/cgi/content/abstract/122/11/1240

Basically, it is a manifestation of your vWB and there isn't anything you can do but stay on top of your dietary intake of iron (without going over).