My 17 year old daughter was diagnosed with von willebrands disease last week. We are both happy to finally have a diagnoses, but feeling a bit overwhelmed. We don’t know which type she has yet. We go back in August for more testing. We actually got the diagnoses a few weeks ago, but because we have no family history at all, her hematologist retested her. I am still in shock. I had never even heard of von willebrands! So here are my questions…is it normal to not have any other relatives with this disease? I have 6 other children. Should they all be tested as well? And lastly, is it normal for women with this disease to have a monthly period where you actually bleed extremely heavy and non-stop for two months at a time?? My poor baby is so anemic, even though she takes iron pills and eats a very high iron diet. I’m so worried about her. Are these normal health issues for someone with this disease?? Thank you for helping answer some of my questions. I haven’t really talked to the hematologist yet.
I have VWD and absolutely no history of it at all! So I know how you feel. I was diagnosed by my Haematologist after being referred to him by my GP for chronic anaemia. I went to see him for an iron infusion as iron tablets, a high iron diet and the iron injections didn't work. The infusion boosts my levels for about 6mths. So I have them done twice a year.
I was also a heavy bleeder with my period. After my first daughter I bled for months and I thought that was completely normal. Then after my second (2.5yrs later) I bled constantly for months then I would stop for a few days all for it to come back. I was at the point where I would have to wear maternity pads and those were soaked after an hour. Some days I would just sit on the toilet and just let it drip (sorry boys I know you don't want to know this!). I went to see my obgyn that delivered my 2nd daughter and she put a Mirena in and since then I have barely had any bleeding. I would look at this as an option for your daughter. Also if I do have a bleed which has happened maybe twice since I had it put in but the bleeding was barely anything they can give you a script for Transexamic acid which I take 2 tablets 3 time a day and it stops the bleeding so it doesn't last long.
Hope this helps
Also im in Perth in Western Australia so things may work differently here than to where you are.
Hello Heather and welcome!
When I read your post it sounded so similar to what my fourteen year old daughter is going through. She has just been diagnosed too and has the same symptoms. It has been such a rollercoaster for her! It amazes me that none of my daughter's doctors realised that she had VWD from the symptoms she has had. I think there are a lot of doctors out there who are not really aware of VFD and how it affects people.
My advice for you is to search for a doctor who really understands what your daughter is going through and to find a good hematologist. For my daughter, going onto the pill and commencing Tranexamic Acid has helped a lot. This has really helped reduce her bleeding time.
Also, this site has been so helpful in letting her know that there are other people going through the same thing.
Good luck and hang in there! X
Thank you all so much for taking the time to reply back with information and encouragement. We are muddling thru information and doing our research. It’s a process for sure! Lol!
Another question…about 4 months ago my daughter injured her knee, but we have no idea how. Her knee swelled and she couldn’t bend it. I took her to the ER and she was diagnosed with a Baker’s cyst (which is very rare for her age). The swelling and pain went away after a few weeks, but the same thing happened a few weeks ago again. She has no idea how she injured it, but woke up one morning with a swollen, painful knee that won’t bend. I have an appt with an orthopedic dr in a couple weeks (soonest I could get). I’m wondering if this could be related to her vWD??
Being overwhelmed by the diagnosis of a disease you probably never heard of is a typical good response. When I got the news I certainly hit Google and spent a lot of time reading articles about this "orphan" disease, ie. very few people have it and it often goes undiagnosed.At least you are on square one now with a preliminary diagnosis.
Knowing more about the disease gives you power over it. Some of the other members have already shared with you some of their experiences. Look through the site discussions and get a feel for what others are going through and how they are managing the feelings and emotions they go through. NIH, Cleveland Clinic, Mayo Clinic and National Hemophilia are trustworthy sites. The following are interesting.
The above are typical of what is out there. The second one is more in plain English.
Establishing the particular type of vWD is important. A VWF multimere test along with a VWF panel and Factor VIII activity test are often used to establish the type and severity of the condition. Type two vWD has several sub-types and refers to the qualitative shape and size of the von Willebrands factor molecules in the blood stream. Type one and three vWD refers to the quantitative number of VWF molecules available for helping clot formation.Factor VIII is a molecule associated with the VWF molecule and lack of either disables part of the body's coagulation scheme. Treatments are available for all three forms.
So keep us up to date and let us know how the hematologists listen to you. Finding the right Hematologist is very important! Not all of them are that familiar with vWD, especially if their practice is more Oncology than hematology!
Keep eating the dark green vegetables!!! And stay in touch!!
John the elder (type III with FVIII inhibitors)
I am not a doctor but I have type III vWD with a complication of near zero factor VIII, that makes my case resemble Hemophilia A. You might want to raise the possibility of Hematoarthrosis (spelling?), with the docs. That condition is where bleeding into the joint spaces occurs and can be painful and is common with Hemophilia A. Just a thought, not a remote diagnosis from a layperson with a chemistry background!
John the elder
Thank you all so much for taking the time to reply back with information and encouragement. We are muddling thru information and doing our research. It's a process for sure! Lol!
Another question...about 4 months ago my daughter injured her knee, but we have no idea how. Her knee swelled and she couldn't bend it. I took her to the ER and she was diagnosed with a Baker's cyst (which is very rare for her age). The swelling and pain went away after a few weeks, but the same thing happened a few weeks ago again. She has no idea how she injured it, but woke up one morning with a swollen, painful knee that won't bend. I have an appt with an orthopedic dr in a couple weeks (soonest I could get). I'm wondering if this could be related to her vWD??
I have type III VWD as well, and I only had one cousin on my dad's side and none on my mom's! From my understanding, Type 1 and 2 VWD are commonly inherited autosomal dominantly (meaning either you or your partner would have the disease) (there is a subtype that is acquired, but that probably doesn't apply to her situation), and type 3 is inherited autosomal recessively (http://www.mayoclinic.org/autosomal-recessive-inheritance-pattern/img-20007457 for more information on inheritance). It sounds like she may have type III, but you really should see a hematologist. Joint bleeds and muscle bleeds are fairly common in people with TIIIVWD, so it is possible that something like that is related.
It might be a good idea to get the rest of your family tested, a hematologist or genetic counselor can tell you more. I agree with the others, do make sure they know what VWD is.
As to your other question, yes it is very normal for women with VWD to have abnormal periods. Myself, I bleed consistently through the month for months (have been right now since March), then I have my "monster TOTM" (right now uggh) and then go quite a few months without one. One option you and she may want to discuss is birth control. I know that it can help regulate periods and decrease the amount of bleeding. If she is as bad as you say she is, this may be a serious option to helping her be more regular. I usually just take it easy during my monster TOTM, take double iron supplements, and up my protein, as well as eating more times in the day. It helps a little. Tylenol helps with the cramps.
A couple of suggestions, look into Stimate (has helped me with the 3-4 hour nosebleeds), and Humate P (the medication I take for the worst of the worst bleeds like if I'm in the hospital). DO NOT LET HER TAKE ANYTHING WITH NSAIDS. Midol, aspirin, ibuprofen, etc. NSAIDS are blood thinners and are really detrimental for people with bleeding disorders.
Other than that, my life with type III VWD has been pretty normal. I get really bad nose bleeds during the winter (3-4 hours each time), and the monster TOTM every year. I scar easily, bruise easily, and have to watch out for joint bleeds and muscle bleeds. Don't feel too overwhelmed. We're here to help!
My very first period lasted for 8 months! I was 13 years old. After almost two months of bleeding my mom said... OK, I thought maybe your body was adjusting.. as I was a "heavy bleeder" (probably because she too has VWD but she never tested)... anyways I went to a family doctor.. who after testing for other things.. decided to finally test for VWD.. After taking many tubes of blood.. my mother got a call a few days later saying they did the test wrong.. could she bring me in for more blood draw.. I don't think I had any blood left lol.
After testing positive for VWD I was scheduled for an appointment with an oncologist/hematologist.. again more testing.. more blood draws.. then I was scheduled for an all day test where they would draw blood.. then run IV's of Stimate.. and then draw again to see if the VW factors increased.. they didn't.. well they did a little.. but it was determined that stimate would not be the answer for me if I was badly injured and bleeding.. that transfusion would be a better choice. Meanwhile back to the never ending period.. I was sent to a pediatric gynie. I was put on birth control.. for a month.. (a high estrogen pill) it did nothing to stop the bleeding... after a month.. she said.. double the dose... so i took it another month and nothing happened.. I still bled. So she switched me to Ovral.. a high progesterone pill.. the dangerous kind that causes strokes! but it worked.. the bleeding finally stopped.. and I have been taking this pill since the age of 13 (I'm 27 now) with only stopping every 4 months to have a period. So in answer to your question YES it is normal I suppose. Hope this helps.