My name is Shay, I’ve just joined this site today (also a poet apparently). I was first diagnosed with VWD type 1 when I was maybe 2-3, after having frequent nosebleeds several times a week. I remember having blood tests and getting blood drawn every month until I was about 6. My mum calls me a mutant since neither of my parents carry the gene, and since VWD is recessive anyway, it’s quite crazy for myself to have it. Anyway, I am 18 now, and although my nosebleeds are much less frequent, I have found I am starting to bruise much easier, horrible purple bruises that I don’t even remember getting. I also started to get longer and longer periods, sometimes lasting a month, until I went on Implanon. I had a tooth removed today, and the bleeding just won’t stop, being over 12 hours later. I’ve had injuries, even tooth removals in the past and have not bled nearly as much or as long. I was just wondering if any fellow type ones out there have experienced that their VWD acts up more frequently/more violently as they get older, and what it’s like for things like childbirth, what sort of precautions and experiences I should expect or could be possible?
Also, wondering if there are others there my age to talk to personally, have never met anyone else with VWD, even many doctors I’ve met know little or nothing about it. Would be good to have someone to talk to about it.
Hi @shayrasmus! I’ve got type 2M, so a little different than yours. I’m going to talk a little about what I’ve learned through my 28 years living with VWD, but I know that some doctors give different advice than others and I may have received incorrect info – or you have! – so take my response with a grain of salt!
Firstly, you should go to the doctor/ER if you’re still bleeding from your tooth extraction. Most dentists I’ve seen have worked closely with my hematologist to make sure procedures (jaw surgery, root canals, etc.) go smoothly in terms of bleeding; I’ve received treatment for the bleeding before major dental procedures.
With that out of the way, from what I know about type 2M and VWD in general, it’s actually kind of rare to inherit it recessively, usually only type 3 and sometimes 2 are recessive, so you may have a more severe type than you think, especially if neither of your parents have symptoms. I was misdiagnosed as a type 1 for many years before I was re-diagnosed when I was doing pre-op for a major spine surgery at 16 years old. My hematologist determined my correct type through genetic testing. It was expensive, but it’s been a game changer for everyone in my family. My dad has VWD and had been treated for nose bleeds as a type 1 with DDAVP and the treatments never did much to help him… which of course was because he and I are both 2Ms! To treat our bleeds – and for pre- and post-operative care – we receive human blood plasma. It’s called Humate-P here (I’m taking from your spelling of “mum” that you’re in the UK maybe? I’m in the US)
As far as childbirth goes, I had a baby 8 months ago and was very concerned about the childbirth process since the anesthesiologists at my hospital said that there was a big risk with placing an epidural. It can lead to uncontrolled bleeding in the spine, which can paralyze or kill you. I know a lot of women with VWD do not receive this guidance, and my two aunts who have VWD had epidurals for the 4 births they have between them and were fine. For me, I didn’t want to take the risk, and I had other reasons for not wanting an epidural anyway, so I had resolved to have a natural childbirth. But I was still worried about what would happen if I needed an emergency C-section. I was told I would be knocked out if they can’t place a spinal block, and I badly wanted to be awake for the birth of my child! So I did hypnobirthing and received the human blood plasma right before I went into labor – I had to be induced so they could time the delivery of the plasma, but induction was much easier than many women had made it out to be – and I had a really easy, beautiful, almost painless labor and delivery. Baby and I were and are still both very healthy and happy! Had there been an emergency, I would have needed to be put under anesthesia to deliver my baby, and the hypnobirthing is really just relaxation techniques, so it can’t guarantee you won’t need a C-section, but it made me feel like I was doing everything I could do avoid that.
Other than seeing a doctor in the near future for your current bleed, I would recommend genetic testing to determine your exact VWD type, and see a qualified hematologist. Get educated about VWD, because you have to be your own advocate. You’re right that many doctors don’t know a lot about it; I’ve had ER doctors tell me things about my VWD that were blatantly wrong and not believe me when I shared my experience. In that situation, you have to ask for another doctor, or switch hospitals/primary care physicians/OBGYNs/whatever. Get a doctor who believes you and understands that you know more about your own body than they do. They have the science, but you have the experience! When I became pregnant, my hematologist called me and said, I don’t have a lot of experience dealing with pregnancy and delivery with your type of VWD, I have to do some research before I can give you a treatment plan. And he called his colleagues and did a ton of research and came back to me with a really thorough plan that made me feel really safe going into my delivery. I trusted him to take the best care of me. That’s so important. Also, when you get pregnant, your body naturally produces more of the clotting factor, so although I had a really aggressive treatment plan going into L&D, I actually ended up only receiving two doses of the Humate, and I think I probably could have gotten away with one or even none. My grandmother, who has VWD, had 6 children naturally without any VWD treatment – she didn’t even know she had it!
Sorry for the novel – I hope this helps!
I wanted to welcome you here, too. I didn’t know anyone else with VWD either, and it’s amazing to have something like this and see that - yes - they are out there!
mjones89 is absolutely right, in my opinion. I also think you have a different form of VWD than you were originally diagnosed with. I, too, have learned that most of the doctors either don’t know anything about it or think it’s all type I. Nurses, however, do seem to have some experience with it, usually because they know someone who has it.
It takes diligence and persistence to make sure you get the care you really need and sometimes it’s tiring, but it’s worth it. Besides, you also meet those people who really research for you and are a wonderful help. They are just rare.
I myself had a bad bleed in reaction to a tooth being removed and nosebleeds and I am a type III.
So may you have good luck in your finding out what is really going on and Bless you and your family!
I actually live in a small town in Australia, we only have one clinic with a handful of doctors, most of them quite useless in my personal experience, no offence to them. I am definitely interested in learning more about my disease on a genetic level, however it is impossible in my town.
I have been told my case is unusual but I’ve always attributed that to doctors who just didn’t know enough about it, they can’t all know every disease ever existing. I am quite positive none of my immediate family displays symptoms, even stretching to grandparents, aunts, uncles, etc. Heart conditions run in the family, but no haemophilic ones. Yet doctors have always informed my family that I was type 1. I rarely have issues with it, and regarding my tooth it is fine now haha, just took a while to stop completely. When I have the opportunity, as we are moving to a larger city in a few years time, I will look more deeply into it, and find a haematologist hopefully.
I know I have a while yet to think about pregnancy and birth but I’ve read the horror stories and the like, and it seems to be the only thing doctors have consistently warned me about.
It’s interesting seeing these forums, so many I see people have many family members with the disease, I didn’t even know that was a common thing.
Thank you so much,
It’s difficult finding doctors and such with a detailed knowledge of the disease, I actually found my dentist today knew more of it than most doctors I’d seen. Perhaps it’s easier in big cities, and I will do my best to look further into it, especially after moving.
What a wonder for sites like this, had I not found it I would have assumed all types of VWD was autosomal recessive, I don’t remember where I got that idea from, but I’ve always thought it haha.
You seem to have a lot of knowledge can you read my post, it’s under Declan’s mom i have a ton of questions. The ER dr told me I didn’t have to worry about my son when he hurt his head because it was Not bleeding a lot, but he really needed intervention because he ended up not healing.
I’m glad you’re getting more information now!
I just wanted to add that no one else in my family has obvious symptoms, either. (I’m VWD Type 3) I get it from my mother, but she is the carrier, it doesn’t mean she has it herself.
So you very well might not see it in anyone else.
You’ll want to be careful and be sure of your diagnosis, but I know many type 1’s are able to have children, so make sure you get all the information you need and have hope!
Good luck to you!