Hemophilia Support Group

Hi Mandy519,
My daughter who is 5 has von Willebrands disease. How long have you been dx'd? Have you joined the National Hemophilia Foundation? They can offer you excellent material on vWD at no cost other then your donation to join of $20.00. I have found them to be quite helpful with so many ??'s and being new to this. Hope you are well and if you would like to chat let me know and if I can offer you info I have I'd be happy to.

Hi f8ythsmom!!I was dx'd with vonwillabrands for 6 yrs now,and also use the ddavp!!I do get a flyer from the london hospital about hemephilia but not much on vvd...Glad to hear from you!!

Mandi519,
Check out this web www.hemophilia.org
They have a list of materials you can order and I received a wonderful book - "A Guide to Living With von Willebrands Disease" written by a nurse who also has vWD. I use it as a reference, I am in the states so I also belong to a local support chapter who sends me a monthly newsletter. Is your vWD well managed or do you suffer frequent bleeds? My daughter, Fayth primarly suffers from bruising, I hope that as she gets older and we dont have more issues. Do you have anything in addition to the vWD, my daughter is also in the process of being tested for Crohns Disease but hopefully that will come back negative, she had positive bloodwork for it, but now we are waiting on the biopsy results. Luckily for me she is a very happy otherwise healthy little girl. Hope all is well with you.

Thanks for all the info!!I still bruise very easilly,the only other problem i have now is HEAVY periods,i used to have alot of nose bleeds that would last for hours but have grown out of that..Ithink were pretty lucky to have it mild,this disease can be awful from what i read!!I was told this is hereditary,but cant find any else in my familly that has this??

My concern for Fayth is heavy periods, I have had issues with that and dont have vWD. As for the hereditary thing, I know they say that someone else (IE> Parent)has to have it in order to pass along, however Fayth was apparently a spontaneuos mutation of genes at conception, becuase both my hubby and I were tested, as was our son and none of us have it. I asked the doc if this was possible and he said anything is really. And I just got the call from her GI and her biopsy results for the Crohns was negative, so now we just need to find out what is causing all her abdominal pain, and why the blood work was +. I thought of another web site that you may want to check out, it is called www.allaboutbleeding.com. I thought maybe you could meet up with some others, and thru the NHF they have what is called Project Red Flag, it for woman/girls with vWD. You are in Canada correct? There is a support organization there, if you want the information on it let me know and I will note it here for you. If you dont mind me asking how do you manage the Heavy Periods? I am so afraid that when we get to that point that she is going to miss a ton of school. I know cross that bridge when I get to it, but she and my son consume most of my time with doc appts, so I really have nothing else to think about. Does your OBGYN work with your Hemoc, do you go to a speciality doc familiar with vWD for your pregnancy attempts. I hope everything works out for you in time. I had a misscarriage, and from there all my female anatomy went down hill. I came to find out that the 2 I have are a miracle of sorts becuase I had a unicornuate uterus which basically means I had a smaller then normal uterus, with only one fallopian tube. They said that they couldn't believe I had my kids becuase they usually find this condition when someone is having infertility issues. So basically what I am trying to say, if it happens it was meant to be and if it doesn't its because there is another little person out there that needs you to adopt him or her and give them all the love and care they may otherwise not get. Best of luck in your search for answers on the baby front. It is nice to have someone to communicate with. I dont know to much about this but I do try and educate myself as much as possible. My husband makes fun of me becuase I am always reading about vWD, Juvenile Arthritis, Migranes, anything my kids have really. Hey after all I am there best advocate since they are to young to do it themselves. Till we chat again then.....

I' m so glad to hear your daughter doesnt have crohns,hopefully you'll figure out the rest of the problems soon..Yes im canadian,my doctors say VWB has nothing to do with getting pregnant its delivery and afterwards there affraid of>>I dont even have to contact my VWB doctor till about 8 months pregnant..To be honest i dont know how i manage my periods(i pray alot!!LOL)I usually have to double up (sorry if this is "TMI")tampon and pad!!I didnt really miss alot of school cause we didnt know back then it was VWB..Im sorry to hear about your misscarriage,who would of thought having babies was so hard..Ive had test done and they cant find anything wrong but i cannot get pregnant,never,Ive always been curious if VWB had something to do with it(which the doctors say it has nothing to do with it)..im glad i finally had a chance to talk to someone who knows stuff about VWB's.thanks agin for all the info..ttyl..bye for now

I just got officially diagnosed with vwd today. I have a family history but i wasn't expecting it to effect me in such a serious way. My periods have always been very light...no problems there but about a month ago they got really heavy and i ended up heamoragging and loosing nearly half my blood. I was in hospital for awhile and they gave me stuff to manage it. I'm a bit nervous how it will change things though.