My daughter was just diagnosed with type 1 VWD. She had severe bleeding after egg harvesting (she was going through in vitro process) in 12/13 and then after the C-section delivery of her twin sons in 2/15. Her OB recommended she be tested and she just finished all the blood testing and just been told of the diagnosis. The hematologist recommended that the twins, my other son and myself be tested. I have noticed that I bruise easily now but otherwise, haven't had any bleeding problems. I do, however, believe that my mother probably had VWD as she had to have a hysterectomy in her late 30's due to excessive bleeding and once had a severe nosebleed which required an ER visit and an extended healing period despite ENT follow-up.
I was wondering if my brother and my mother's two surviving siblings should be tested as well although I am not aware of any of them having any unusual bleeding problems.
Hi me and 3 of my son's a vwd type 1 I am waiting for my 4th son to be tested. I never knew I had it till I was 27 years old and only found out through my oldest son getting diagnosed I would get everyone that the doctors are willing to test because you can never be too careful. It is a really scary thing especially when you don't know a lot about it I'm still learning myself and I'm always in a&e with my 2 eldest sons. Hope this helps x
I was diagnosed with the same 15 years ago while undergoing in vitro. After egg implantation I would bleed non stop and spontaneously abort. Finally after 9 years of on and off trying I was able to conceive and deliver my daughter prematurely. She also has VwD which is currently pretty well controlled with meds. Many members of my family have had bleeding issues, unbearable pain during periods and a couple with difficulty conceiving. Testing can't hurt for informational purposes but if they're not having bleeding problems they might not want or feel the need to. I couldn't talk anyone in my family into getting tested but I didn't have the encouragement of a Hematologist behind me like you do. I just think our family doesn't understand how much info can benefit future generations.
I was diagnosed with the same 15 years ago while undergoing in vitro. After egg implantation I would bleed non stop and spontaneously abort. Finally after 9 years of on and off trying I was able to conceive and deliver my daughter prematurely. She also has VwD which is currently pretty well controlled with meds. Many members of my family have had bleeding issues, unbearable pain during periods and a couple with difficulty conceiving. Testing can't hurt for informational purposes but if they're not having bleeding problems they might not want or feel the need to. I couldn't talk anyone in my family into getting tested but I didn't have the encouragement of a Hematologist behind me like you do. I just think our family doesn't understand how much info can benefit future generations.
Not sure why I am having so much trouble but my replies keep disappearing! Anyway, trying again and hope this one doesn't disappear. My son agreed to follow up with testing although he doesn't seem to have any bleeding problems so hopefully, he doesn't have VWD. As to my brother, again the same and he doesn't have children so that's one less concern.
Just want to ask onemom if your hematologist/OB recommended no further in vitro procedures once you were diagnosed. My daughter's hematologist indicated it wouldn't be advisable so just wondering.
Do either of you know if there is a minimum age limit before offspring can be tested? My twin grandsons are just 8 months old now.
Thanks so much for the information. Still reading up on this so know what to do.
onemom said:
I was diagnosed with the same 15 years ago while undergoing in vitro. After egg implantation I would bleed non stop and spontaneously abort. Finally after 9 years of on and off trying I was able to conceive and deliver my daughter prematurely. She also has VwD which is currently pretty well controlled with meds. Many members of my family have had bleeding issues, unbearable pain during periods and a couple with difficulty conceiving. Testing can't hurt for informational purposes but if they're not having bleeding problems they might not want or feel the need to. I couldn't talk anyone in my family into getting tested but I didn't have the encouragement of a Hematologist behind me like you do. I just think our family doesn't understand how much info can benefit future generations.
I can see two sides of this issue… knowing the diagnosis but not having symptoms causes fear for some people and knowing the diagnosis and wearing a medic alert bracelet or having info about the condition in your wallet may save your life in an emergency or accident situation.
I go with your Hematologist. I was diagnosed with type III (acquired) at age 69. A mutation in bone marrow stem cells probably created the condition that destroys my coagulation chemistry. Most doctors and ER people do not see VWD people often enough to cause them to consider Factor VIII or VWF deficiency or malformation when an injured person shows up. If the bleeding is internal they might not even check until the Hemoglobin counts drop to dangerous levels.
I wear a medic alert bracelet 24/7. It has the standard symbol of a six-sided red cross and a snake around a pole to let the ER people know to look on the other side. On the back I have my name and date of birth, “Bleeding Disorder”, VonWillebrands SEVERE, FVIII VWF inhibitors, ICE ### ### ####. (in case of emergency phone number).
The first thing I tell a new doctor or treatment person is that my VWD is similar to Hemophilia A, which it is, and that gets there attention, quickly. If I go to the hospital, I carry info about VWD from National Institute of Health, recent blood tests and copies of my vonWillebrands special blood tests for Desmopressin (Stimate) response and presence of inhibitors. My treatment in the ER is better because I can tell them and show them which road to look down in deciding my treatment.
My case is not hereditary but there are only a few hundred of me in the world. 99.999% of VWD is hereditary and we have people on the site who have both type 1 and type two issues as the gene for 1 is not the same as the gene for 2 and you can have one, two , neither or both. So encourage the family to get the testing done and if you have the condition, wear the bracelet!!!
The hematologist already advised my daughter to get the medic alert bracelet. If my testing is positive, I will also get one.
I was wondering how the new privacy laws impact on this information being in my daughter's medical records. For instance, only her internist is being provided a copy of the hematologist's report because he referred her. She has a copy of the report which she has to take to her sons' pediatrician so their testing can be arranged and she is giving me a copy of the report to take to my internist. She was told to inform her OB of the diagnosis but he doesn't automatically get a copy! And I just realized, she needs to let her dentist know about this as well. Seems a little disjointed!
Johntheelder said:
Hi RosieHi!
I can see two sides of this issue... knowing the diagnosis but not having symptoms causes fear for some people and knowing the diagnosis and wearing a medic alert bracelet or having info about the condition in your wallet may save your life in an emergency or accident situation.
I go with your Hematologist. I was diagnosed with type III (acquired) at age 69. A mutation in bone marrow stem cells probably created the condition that destroys my coagulation chemistry. Most doctors and ER people do not see VWD people often enough to cause them to consider Factor VIII or VWF deficiency or malformation when an injured person shows up. If the bleeding is internal they might not even check until the Hemoglobin counts drop to dangerous levels.
I wear a medic alert bracelet 24/7. It has the standard symbol of a six-sided red cross and a snake around a pole to let the ER people know to look on the other side. On the back I have my name and date of birth, "Bleeding Disorder", VonWillebrands SEVERE, FVIII VWF inhibitors, ICE ### ### ####. (in case of emergency phone number).
The first thing I tell a new doctor or treatment person is that my VWD is similar to Hemophilia A, which it is, and that gets there attention, quickly. If I go to the hospital, I carry info about VWD from National Institute of Health, recent blood tests and copies of my vonWillebrands special blood tests for Desmopressin (Stimate) response and presence of inhibitors. My treatment in the ER is better because I can tell them and show them which road to look down in deciding my treatment.
My case is not hereditary but there are only a few hundred of me in the world. 99.999% of VWD is hereditary and we have people on the site who have both type 1 and type two issues as the gene for 1 is not the same as the gene for 2 and you can have one, two , neither or both. So encourage the family to get the testing done and if you have the condition, wear the bracelet!!!
I recommend your other family members receive testing also. This is usually how VWD Diagnosis works. One family member finds out they have it, the rest are gradually tested. It's important to know for an emergency situation, and a hematologist once told me she often sees people coming in with issues as they age, and it's complicated figuring out what is wrong. Better to know, and then deal with any issues that arise. The biggest problem with VWD in my family is not the bleeding, but the bruising. DDAVP can make a huge difference if having surgery, etc. Better to know and be able to prevent problems. Also, the bleeding can present a problem in procedures you might not think of. For example, an angioplasty got very complicated for my dad when he didn't stop bleeding through the incision sight (and of course he was on blood thinners for heart problems). In the middle of major heart issues, it's good to know. We didn't know at the time, but do now because of my daughter. I found out I had it at 40, but didn't even know it existed before that. It helped me figure out a lot of things about my own health, but prior to that I would of told you I didn't have any bleeding problems. It's all perspective! Since your own body is the only one you truly know, you think it's normal, but then find out it's not how everyone else works! A simple VWD blood panel will show it. Further testing and doctor interpretation helps pin down which type.
When I get blood draws for testing I get asked to whom do I want results forwarded (usually). HIPA rules make you the boss, most of the time. If the lab doesn’t ask, then you firmly request it, (with a “could you please”). If they refuse, ask how you get the results to the people you feel need it to protect your health. The people behind the registration desk have no clue how your condition relates to Dental Care or any other specialty different from the prescribing physician so be strong.
I told my Dentist that I had just gotten the diagnosis for VWD (acquired) and explained it the best I could but he was clueless and let me go ahead with a routine cleaning. Needless to say, six hours later I looked like Dracula after lunch. I spent eight hours in the ER, (we have a rural hospital) ,spitting blood into a cup. The staff had to go back to their textbooks to find out what was going on. After that episode, I started carrying my little black looseleaf with blood test results, NIH info on VWD and my Hematologist’s number.
Now I carry Amicar and Stimate to the Dentist and the Hygienist is extra-careful and only does a superficial job but she does it four times a year.
The Amicar (aminocaproic acid) is nice because it interferes with an enzyme in saliva that attacks newly formed clots. The Stimate doesn’t do much for me because I have inhibitors to VWF and FVIII, but so far, I haven’t needed dental work that afffects the gums. I also floss four times a day and brush my teeth after any food or coffee. It does make a difference!
Frances, your comment about thinking your body is functioning normally until you find out that it hasn't been because you have VWD. My daughter said she was having nosebleeds during her pregnancy but she thought it had to do with all the medications she was on and never brought it up to her OB.
I have been taking baby aspirin regularly since I went to the ER last year with some cardiac symptoms. Although testing showed no heart problems, the hospitalist "encouraged" me to go back on daily aspirin after noticing that I had had a TIA in 2005. I am now beginning to wonder if that is why I am bruising so easily now.
John, I haven't had any problems with dental cleanings but I think it's the daily flossing that is key to that. Because my teeth are pretty clean and my gums are healthy, the hygienist hasn't had to poke around so much. I also switched to the Oral-B electric toothbrush and use the sensitive (soft) toothbrush attachments (the other Oral-B toothbrush attachments can cause havoc if your gums are not in good shape). While it is pricey, using the electric toothbrush has been so much better for me to keep up my dental hygiene.
Well, there is a lot of follow up to arrange now.
Thanks for all your responses. It's been very helpful and I will pass on this information to my daughter. She was feeling pretty down when she got the diagnosis even though it was pretty clear she had VWD - I guess we need to look at this positively in that she was diagnosed fairly early and if her son(s) have VWD, it helps us know how to proceed.